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The Reliability, Validity and Feasibility of Tools Used to

Screen for Caregiver Burden: a Systematic Review

Kimberly J. Whalen MLIS


Purdue University Calumet
Hammond, Indiana
USA

Susan W. Buchholz PhD, RN


Purdue University Calumet
Hammond, Indiana
USA

Review was published in JBI Library of Systematic Reviews in 2009.


The definitive version is available at
http://www.joannabriggs.edu.au/pubs/systematic_reviews.php
Abstract

Objective The overall objective of this review is to quantitatively measure the psychometric
properties and the feasibility of caregiver burden screening tools. The more specific
objectives were to determine the reliability, validity as well as feasibility of tools that are
used to screen for caregiver burden and strain.

Inclusion criteria This review considered international quantitative research papers that
addressed the psychometric properties and feasibility of caregiver burden screening tools.

Search strategy The search strategy aimed to find both published and unpublished studies
from 1980-2007 published only in the English language. An initial limited search of
MEDLINE and CINAHL was undertaken followed by analysis of the text words contained in
the title and abstract and the index terms used to describe the article. A second search
identified keywords and index terms across major databases. Third, the reference list of
identified reports and articles was searched for additional studies.

Methodological quality Each paper was assessed by two independent reviewers for
methodological quality prior to inclusion in the review using an appropriate critical appraisal
instrument from the Joanna Briggs Institutes‟ System for the Unified Management,
Assessment and Review (SUMARI) package.

Limitations Because burden is a multidimensional construct defined internationally with a


multitude of other terms, only those studies whose title, abstract or keywords contained the
search terminology developed for this review were identified for retrieval.

Results The construct of caregiver burden is not standardized, and many terms are used to
describe burden. A caregiver is also identified as a carer. Instruments exist in multiple
languages and have been tested in multiple populations. A total of 112 papers, experimental
and non-experimental in nature, were included in the review. The majority of papers were
non-experimental studies that tested or used a caregiver burden screening tool. Because of
the nature of these papers, a meta-analysis of the results was not possible. Instead a table is
used to depict the 74 caregiver burden screening tools that meet the psychometric and
feasibility standards of this review. The Zarit Burden Interview (ZBI), in particular the 22-
item version, has been examined the most throughout the literature. In addition to its sound
psychometric properties, the ZBI has been widely used across languages and cultures.

Implications for Practice and Research The significant amount of research that has already
been done on psychometric testing of caregiver burden tools has provided a solid foundation
for additional research. Although some tools have been well tested, many tools have
published limited psychometric properties and feasibility data. The clinician needs to be
aware of this and may need to team up with a researcher to obtain additional research data on
their specific population before using a minimally tested caregiver burden screening tool.
Because caregiver burden is multidimensional and many different terms are used to describe
burden, both the clinician and researcher need to be precise in their selection of the
appropriate tool for their work.

Keywords: caregivers, burden, strain, quality of life, psychometrics


Background
Family members and significant others find themselves in the role of caregiver for a
multitude of reasons. The demand for caregivers continues to rise worldwide as a result of an
increasingly aged population, multiple co-morbidities, people who survive traumatic injuries
and the results of the HIV/AIDS epidemic.1 Caregivers and carers provide care to family
members or friends who are ill or disabled and typically need help with daily tasks.2

While family members have always played a significant role in caring for other ill family
members, changes that have occurred both culturally and medically have made the role of
caregiver more difficult.3 The role of being a caregiver can be demanding. Caregiver burden
is defined as “…the physical, psychological or emotional, social and financial problems that
can be experienced…” by caregivers.4 Caregiver burden or strain can result from the role of
providing care to one or more individuals over a period of time.5

Early caregiver burden screening instruments were typically interview schedules.6 Self-
reporting tools began to be used when Professor Steven Zarit of Pennsylvania State
University published his tool in 1980.7 This tool, the Zarit Burden Interview (ZBI), is now
used world-wide.8 Many other caregiver burden tools exist which health care providers could
potentially use to measure caregiver burden. Caregiver burden instruments often focus
around the different disease processes of the person being cared for. There are numerous
examples of how caregiver burden has been examined by how specific disease entities affect
the caregiver. These include: examining caregiver burden that results from caring for an
individual with a chronic physical illness;9 caring for the elderly;10 caring for those with
cancer and in need of palliative care;11 caring for people with dementia;12 and caring for those
with psychiatric illness.13 Caregiver burden tools have been used in many countries and
several caregiver burden tools have been translated into other languages.14-16

Reviews have examined caregiver burden in reference to specific disease entities. One review
retrieved studies about informal caregivers from two major databases.6 To date no systematic
review of worldwide literature and grey literature has examined the psychometric properties
of caregiver burden screening tools. This systematic review was undertaken to determine the
reliability and validity of caregiver burden screening tools and the feasibility of their use.
Reliability was assessed by examining stability, internal consistency and equivalence of
instruments. Statistical conclusion validity, internal validity, construct validity and external
validity of instruments was examined.17,18 Feasibility regarding ease of use, length and
appropriate language translation was also examined.

Objectives
The overall objective of this review was to quantitatively measure the psychometric
properties and the feasibility of caregiver burden screening tools.

The more specific objectives were to:


Determine the reliability of tools that are used to screen for caregiver burden and strain.
Determine the validity of tools that are used to screen for caregiver burden and strain.
Determine the feasibility of tools that are used to screen for caregiver burden and strain.
Inclusion criteria

Types of participants
The quantitative and narrative component of the review considered studies that included
children or adults providing care to other individuals.

Types of intervention
The quantitative and narrative component of the review considered studies that evaluated
screening tools which measure caregiver burden and strain.

Types of studies
The quantitative component of the review examined quantitative research that addressed the
reliability, validity and feasibility of caregiver burden screening tools. The review considered
experimental, quasi-experimental, pre-experimental and non-experimental studies undertaken
in in-patient and out-patient settings.

Types of outcomes
The review considered studies that included the following outcome measures: reliability,
validity and feasibility.

Search strategy
The comprehensive search strategy aimed to find both published and unpublished studies
from 1980-2007 published only in the English language. A three-step search strategy was
utilized in each component of the review. An initial limited search of MEDLINE and
CINAHL was undertaken followed by analysis of the text words contained in the title and
abstract and the index terms used to describe the article. A second search used all identified
keywords and index terms across all other included databases (Appendix I). Third, the
reference list of identified reports and articles was searched for additional studies.

Method of the review

Methodological quality
Papers selected for retrieval were assessed by two independent reviewers for methodological
validity prior to inclusion in the review using a standardized critical appraisal instrument. The
Joanna Briggs Institute Critical Appraisal Checklist for Experimental Studies was used
(Appendix II). Any disagreements that arose between the reviewers were resolved through
discussion.

Data extraction
Data was extracted from papers included in the review using data extraction tools. The
standardized Joanna Briggs Institute Data Extraction Form for Experimental/Observational
Studies (Appendix III) was used. For this systematic review a Data Extraction Form for
Psychometric and Feasibility Assessment was developed (Appendix IV).

Data synthesis
Quantitative papers were reviewed for psychometric and feasibility data. Because of the
nature of these papers, statistical pooling was not possible so the findings are presented in
table form. If the paper had sound psychometric and feasibility data on more than one
instrument, each instrument was analyzed separately. Data about the type of instrument used,
the country or countries that the instrument was used in, the caregiver population and the
sample size was retrieved from the article. Data on the stability, internal consistency and
equivalence reliability measures was retrieved when available. When Cronbach‟s alpha was
given, the total Cronbach‟s alpha measure was noted. If more than one total Cronbach‟s alpha
was noted, they were both presented. If no total Cronbach‟s alpha measure was noted, then
the subscale Cronbach‟s alpha measures were noted. Statistical conclusion, construct,
internal and external validity were retrieved when available.18 Data on measurement quality
was retrieved when available. Data regarding feasibility of the study including the number of
questions, type of questions, who completes the instrument, how long the instrument takes to
complete and language translation was retrieved. If the instrument or items from the
instrument were available in the text, this was also noted.

Results

Description of studies
The final search strategy identified 1667 references. Further appraisal resulted in the full-text
retrieval of 222 articles. Reviewers analysed the full-text of the 222 articles and determined
that 112 contained the appropriate psychometric property and feasibility data for inclusion in
this review. Of the 112 articles, only two are randomized control trials or quasi-experimental
studies that meet the requirements of Level 2 evidence. All others meet the requirements of
Level 3 evidence. A table describing the caregiver burden screening tools, their reported
psychometric properties and the reported feasibility data within the included articles is
attached in Appendix V. Tools are listed in the table alphabetically by the name of the tool
and in reverse chronological order. Included articles are attached in VI.

Within the 112 included articles, 74 caregiver burden screening tools were identified. The
Zarit Burden Interview, Caregiver Reaction Assessment and Caregiver Burden Inventory
were the most frequently examined and reported tools. Many tools were modified to
accommodate specific research needs.

Several articles reported on multiple tools, however, not all articles reported full
psychometric data. Of the articles included, 10 reported tools that had 10 or fewer questions,
32 reported tools that had 11-20 questions, and 41 reported tools that had more than 20
questions. The majority of tools (70) included a Likert scale. Seven tools measured nominal
responses and 4 tools used visual analogue scales. Not many articles reported the
administration of the tool, however 7 reported using self-administered questionnaires and 12
reported using interview-administered questionnaires. Four articles reported that the tools
took 10 minutes or less to complete, 7 reported that the tools took 11-20 minutes to complete,
and 12 articles reported that the tools took more than 20 minutes to complete. Sample sizes
ranged considerably in these studies from 10 to 984, although few studies provided power
analysis information. Twenty-eight studies reported having 50 or fewer participants. Thirty
studies reported having 51-100 participants. Forty-three studies reported having 101-200
participants. Twenty studies reported having 201-300 participants and 13 studies reported
having over 301 participants.

The 110 excluded articles were eliminated for a number of reasons including insufficient
psychometric property data or insufficient sample size. Also many of the tools described in
the excluded articles did not measure burden as defined for this review. Excluded articles,
and the reasons for their exclusion, are provided in Appendix VII.
Figure 1 Flow chart of search and retrieval process and results

Relevant Studies Identified Through Search


Reviewers Reviewed Title, Abstract
and Keywords
n=1667

Studies Identified for Full- Studies Excluded,


Text Retrieval Not Retrieved
n=227 n=1440

Studies Retrieved in Studies Unable to


Full-Text for Retrieve in Full-Text
Appraisal n=5
n=222

Studies Studies
Included in Excluded
Review from Review
n=112 n=110

Discussion

Validity

Caregiver burden is a complex construct. The original roots of caregiver burden research
were with mentally ill relatives in the 1960‟s.19 Zarit and his colleagues laid significant
foundational research on caregiver burden of relatives with dementia in 1980.7 In the mid-
1980‟s Poulshock and Deimling examined the multidimensional perspective of caregiver
burden.20 Caregiver burden dimensions now include the physical, psychological or
emotional, social and financial problems that occur as a result of being a caregiver.4
Therefore it is not surprising that many different subscales of caregiver burden have been
developed over the past three decades.

Within the context of construct validity, concurrent validity was frequently tested in this
review of instruments. Most authors were careful to delineate the different tools used for
comparison in construct validity. Not surprisingly, a significant number of studies had some
of type of factor analysis completed, often accompanied by extensive tables and figures,
providing the reader with clear item subscale information.

One of the most widely used divisions for caregiver burden is objective and subjective
burden.21-25 Objective burden is “the extent of disruptions or changes in various aspects of the
caregiver‟s life and household”.24 Subjective burden “reflects the caregiver‟s stress and
nervousness related to her or his situation and the extent to which the caregiver feels
manipulated by the demands of the care receiver”.24

Many different tools have been developed to examine caregiver burden. The names given to
caregiver burden scales include not only the term burden, but may use other constructs such
as outcomes,26,27 appraisal,28 inventory,29 impact,30 network,31 quality of life,32 reaction,33
risk,34 strain,35,36 hassles,37 cost of care,38 experiences,39 and stress.40 Therefore it is important
for the clinician and researcher to review the actual items that are used to measure these
various constructs, because many of these instruments do measure the hardships experienced
physically, psychologically, emotionally, socially and financially by caregivers. A multitude
of instruments measure very specific concepts of caregiver burden such as worry,
developmental burden, isolation, guilt, blame, powerlessness, sense of entrapment,
scheduling concerns and strain. 21,33,41-46 Many instruments have also been developed that
measure the other side of caregiving, the satisfaction that occurs from being a caregiver.
There are several instruments that provide subscales for both the positive aspects of
caregiving satisfaction as well as the negative aspects of caregiving burden.28,39,47

As scales have been tested and developed, different names have been given to the same tool.
This is most evident with the widely used “Zarit Burden Interview”. Originally a 29-item tool
titled “The Burden Interview” it is now typically a 22-item tool.7 However researchers have
made several modifications to the name of the tool.48-51 This tool has been modified into
shorter and screening versions.52 Also, the language or country that this scale has been used
in has been added to the name such as Spanish, Brazilian and Japanese.53-56 There are also
tools that have the same name, but are actually different tools. An example of this is the
“Caregiver Burden Scale”.42,43,57,58

Caregiver burden is a construct that is recognized internationally. However the term caregiver
is not used synonymously throughout the world. In the United Kingdom and Europe the term
carer is used more frequently than caregiver. This is evidenced in part by tools that have been
tested in the United Kingdom, Netherlands, Austria, other European countries and New
Zealand that have the word „carer‟ within the tool title.14,16,46,47,59 In Japan, the term
„Sekentei‟ is used instead of caregiver burden and is a construct that “refers to an individual‟s
concerns about behaving in a socially acceptable manner as judged by others”.60,61 Caregiver
burden scales have been translated into multiple languages including Asian languages such as
Chinese,62-65 Mandarin,66 Korean,15,23 Cantonese,67 Japanese,8,49,56,60,68,69 and Hindi;45
European languages such as Spanish,53,70 Greek,47 Italian,47,71 Polish,47 Dutch,14,72
French,55,73,74 Swedish and Norwegian;47,75 and the South American language of Portuguese
used in Brazil;76 as well as the African language of Yoruba.22 The psychometric testing of
caregiver burden screening tools has spanned six continents in less than three decades.
Although caregiver burden was originally measured in limited caregiver populations,
caregiver burden is now measured in multiple populations. These populations include
caregivers of the elderly, people with dementia and Alzheimer‟s disease, people with various
psychiatric illnesses, people that have experienced various neurological diseases or events,
people with chronic illnesses, people that have had a traumatic brain injury and people with
developmental disabilities.

Reliability

Most studies provided reliability data in the form of a Cronbach‟s alpha for subscale scores
and total scores. Over 75% of the reported Cronbach‟s alpha measures were .80 or greater.
For the studies that conducted a test-retest analysis, the majority had results greater than .80.
Intra Class Correlation Coefficient measures were reported 7 times and ranged from.66 to
.99. Interrater reliability was reported 4 times and ranged from .78 to 1.00.

Feasibility

The most popular type of measurement used was Likert scales. The Likert scales typically
ranged from 4 to 7 response categories. This is useful for researchers because of the higher
level of measurement that interval level data provides.17 Other measurement tools employed
dichotomous or other categorical scales to quantify caregiver burden. While nominal data is
more limited statistically, it may be easier for some populations to answer. A small number of
studies tested visual analogue scales which are becoming increasingly popular for ease of use
in the clinical setting. Administration time ranged widely with only half of the tools taking 20
minutes or less to complete. Many of the tools have already been tested in other languages,
providing a significant international library of available caregiver burden screening tools.
Seventy-two of the articles published complete tools or items from the tool within the text
and 3 articles stated that the author be contacted directly for the tool.

Conclusion

Implications for practice


In this systematic review there are over 74 instruments that measure caregiver burden as a
total scale or subscale of the instrument. Because there is such a plethora of caregiver burden
tools to choose from, the clinician has the ability to maintain very high practice standards
when choosing which tool to use. Several of these tools have been well tested and have sound
psychometric data. However there are tools in the literature that have had minimal testing,
especially in regards to external validity. The clinician needs to be aware of this and may
need to team up with a researcher to obtain additional research data on their specific
population before using a minimally tested caregiver burden screening tool in practice.

Because caregiver burden is multidimensional, and there is a lack of standardization among


caregiver burden tools,77 the clinician needs to carefully examine the subscales and items in
each tool to assess if they are measuring the dimension or dimensions of burden they are
specifically interested in. Tools vary considerably in length, and the clinician needs to be
wary of tools that may take a significant amount of time to complete. Although significant
information on caregiver burden screening tools has been published, scant information was
provided on literacy levels. Therefore it is likely that the clinician will need to do a literacy
assessment of the tool before using it in a practice setting. There are several relatively short
scales available that may be useful in the clinical setting but need further psychometric
testing before they can be used for intervention work.

The vast majority of studies used in this systematic review were non-experimental studies.
Although a significant body of research has been done in intervention research using
caregiver burden screening tools as a way of measuring outcomes, few of these studies had
significant psychometric data in the results. Since this systematic review intends to provide a
scope of the psychometric and feasibility properties of caregiver burden screening tools,
those studies were not included in this review. Also, it is not the purpose of this systematic
review to provide the clinician with the “best” caregiver burden screening tool. Instead this
review guides the clinician in identifying the caregiver burden screening tool most
appropriate for their practice.

Implications for research


The significant amount of research that has already been done on psychometric testing of
caregiver burden tools has provided a solid foundation for additional research. Although
some tools have been well tested, many tools have published limited psychometric properties
and feasibility data. These latter studies deserve further nonexperimental research work
before they are used in experimental studies to determine the outcomes of various
interventions used to relieve caregiver burden. Many of the tools are fairly lengthy and while
they may be useful in the research setting, they may not be as practical when translated into
practice. Some work has been done in examining shortened or screening versions of already
existing instruments, and this area continues to deserve further attention for effectiveness of
translation of these instruments into practice.73,78 The researcher needs to be keenly aware
that many of the caregiver burden screening tools have very specific areas of burden that they
measure. A significant amount of factor analysis work has already been done to determine
correct subscale use, especially with language translation, and continues to deserve attention
by the researcher when expanding the use of various caregiver burden tools into other
cultures.45,79-81

In light of the findings of this systematic review, specific populations deserve attention and
awareness by caregiver burden researchers. As the needs of caregivers of people with HIV
and AIDs continue to expand globally, further psychometric testing should be done on
caregiver burden tools applied to this population. Another broad population group that needs
continued psychometric study is caregivers of children with health concerns. The same
applies for researchers that study children caregivers, in particular children less than 18 years
of age who care for an elderly, ill or disabled relative. A child‟s specific caregiver burdens
are confounded by their own developmental needs and emerging abilities. Countries with
rapidly expanding caregiving needs such as India, and several countries in Africa deserve the
researcher‟s attention, since only minimal psychometric data has been published about
caregiver burden screening from these regions. Because the demand for caregivers will
continue to rise in the next several decades, and because caregiver burden is a typical result
of caregiving, there is an ongoing need for exploratory and interventional research to assess
and provide interventions to help alleviate the burden of the caregiver.

Conflict of interest
There are no conflicts of interest.
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Appendix I Search Strategy

The databases searched included:


EBSCO‟s CINAHL
The Cochrane Library
EBSCO‟s Health Source: Nursing/Academic Edition
Elsevier‟s Science Direct
EMBASE
ISI Web of Knowledge
Wiley InterScience
ProQuest Dissertation and Theses
FirstSearch Dissertation Abstracts
MEDLINE
PubMed
TRIP (Turning Research Into Practice)
BioMed Central
Centre for Reviews and Dissemination (CRD)
American College of Physicians

The search for unpublished studies included:


Dissertations
Conference Proceedings
Index to Theses in Great Britain and Ireland
New York Academy of Medicine - Grey Literature Report and Grey Literature Collection
AHRQ (Agency for Healthcare Research and Quality)
Theses Canada Portal
NLM Gateway
Centre for Evidence in Ethnicity, Health and Diversity (CEEHD) from Warwick Medical
School
GoogleScholar.com
Clinical Medicine (ClinMed) Netprints Collection
Geneva Foundation for Medication Education and Research
Health Technology Assessment (HTA)
Institute for Health & Social Care Research (IHSCR)
National Library for Health (NLH)
The Open University
World Health Organization and Information Networks for Knowledge Database Library
(WHOLIS)

Initial keywords used included:


Caregiver burden, caregiver support, caregiver strain, caregiver stress, caregiving, carer,
clinical assessment tools, screening tools, instrument, Brief Assessment Scale for Caregivers
(BASC), Caregiver Assessment Scale (CAS), Caregiver Quality of Life Index, Experience of
Caregiving Inventory, Family Burden Inventory Scale, General Health Questionnaire (GHQ),
Neo Five-Factor Inventory, Perceived Burden Scale (PBS), Perceived Caregiver Burden
(PCB), Perceived Family Burden Scale (PFBS), Rapid Screen for Caregiver Burden, Relative
Stress Scale (RSS), Subjective and Objective Family Burden Interview, Subjective Burden
Scale (SCB), and Zarit Caregiver Burden Interview (ZBI).

An example of a CINAHL Search:


1. Explode caregiver burden
2. Explode caregiver support
3. Keyword caregiver strain
4. Explode clinical assessment tools
5. Explode instrument
6. Keywords brief assessment scale for caregivers OR caregiver assessment scale OR
caregiver quality of life index OR experience of caregiving inventory OR family burden
inventory scale OR general health questionnaire OR neo five-factor inventory OR perceived
burden scale OR perceived caregiver burden OR perceived family burden scale OR rapid
screen for caregiver burden OR relative stress scale OR subjective and objective family
burden interview OR subjective burden scale OR zarit caregiver burden interview
7. Combine 1 or 2 or 3
8. Combine 4 or 5 or 6
9. Combine 7 and 8
10. Keywords Valid$ or Reliab$
11. Combine 1 and 6 and 10
Appendix II
Critical Appraisal Checklist for Experimental Studies

Reviewer _______________________________________________ Date ______________


Author _________________________________________________ Year ______________
Record Number ____________________
___________________________________________________________________________

Yes No Unclear N/A


1. Was the assignment to treatment groups random? □ □ □ □

2. Were participants blinded to treatment allocation? □ □ □ □

3. Was allocation to treatment groups concealed from □ □ □ □


the allocator?

4. Were the outcomes of people who withdrew described □ □ □ □


and included in the analysis?

5. Were those assessing outcomes blind to the treatment □ □ □ □


allocation?

6. Were the control and treatment groups comparable at □ □ □ □


entry?

7. Were groups treated identically other than for the named □ □ □ □


interventions?

8. Were outcomes measured in the same way for all □ □ □ □


groups?

9. Were outcomes measured in a reliable way? □ □ □ □

10. Was there adequate follow-up (>80%)? □ □ □ □

11. Was appropriate statistical analysis used? □ □ □ □

___________________________________________________________________________

Overall Appraisal: □ Include □ Exclude □ Seek further info.


Reviewer’s Comments (Including reasons for exclusion):
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
Appendix III

Data Extraction Form for Experimental/Observational Studies

Reviewer ________________________________________________ Date ______________

Author ________________________________________________ Year ________________

Record Number ___________________

___________________________________________________________________________

Study Method: □ RCT □ Quasi-RCT □ Longitudinal


□ Retrospective □ Observational □ Other

Participants:
Setting: ___________________________________________________________________

Population: ________________________________________________________________

Sample size: _______________________________________________________________

Intervention:
Intervention 1: ______________________________________________________________

Intervention 2: ______________________________________________________________

Intervention 3: ______________________________________________________________

Clinical Outcome Measures:

Outcome Description Scale/Measure


Study Results:
Dichotomous Data

Outcome Intervention ( ) Intervention ( )


Number/Total Number Number/Total Number

Continuous Data

Outcome Intervention ( ) Intervention ( )


Mean and SD (Number) Mean and SD (Number)

Author’s Conclusions:

___________________________________________________________________________

___________________________________________________________________________

___________________________________________________________________________

Reviewer’s Comments:

___________________________________________________________________________

___________________________________________________________________________
Appendix IV

Data Extraction Form for Psychometric and Feasibility Assessment

Instrument_________________________________________________________
Article_______________________________________________Year_________
Reviewer____________________________________________ Date__________

Reliability:
Stability Test-Retest
Reliability
Stability Parallel
Forms
Internal Consistency Cronbach‟s
alpha
Internal Consistency Split Half

Internal Consistency Kuder-


Richardson
Equivalence of Interrater
Instruments Reliability
Equivalence of Kappa
Instruments Statistic
Equivalence of Intraclass
Instruments Correlation

Validity:
Statistical
Conclusion Validity

Construct Validity Face Validity


Translational
Validity
Construct Validity Content
Translational Validity
Validity
Construct Validity Concurrent
Criterion Validity
Validity
Construct Validity Predictive
Criterion Validity
Validity
Construct Validity Convergent
Criterion Validity
Validity
Construct Validity Discriminant
Criterion Validity
Validity
Construct Validity Sensitivity
Criterion
Validity
Construct Validity Specificity
Criterion
Validity
Construct Validity
Factor
Analysis

Study Design:
Internal Validity

External Validity

Feasibility:
Number of
Questions/Length

Type of Questions

Who Completes
Instrument

Time to Complete
Instrument

Literacy level

Language
Translation

Ease of
Administration
and Scoring
Availability of
Instrument/Cost

Other Remarks:

©Buchholz, S. W., Whalen, K. J., Block M. E. (2008)


Appendix V

Table of Psychometric and Feasibility Assessment of Caregiver Screening Tools

Name of Tool Author Setting Caregiver Sample Reliability Validity Feasibility Subscales Other Level
(Year) Population Size Remarks of Evi-
dence
Bakas Bakas T, USA Family N=104 Cronbach‟s Demonstrated Tool 12 items listed 3
Caregiving Champion caregivers alpha = .90 face and reduced in Table 3; 10
Outcomes V (1999) of stroke concurrent from 48 to items listed in
Scale (BCOS) survivors validity; 27 to 12 to Table 5
Factor 10 items;
analysis data 7-point
provided Likert scale
Bakas T, USA Family N=147 Cronbach‟s Demonstrated 15-item Comparison 3
Champion caregivers alpha = concurrent tool; 7- made between
V, Perkins of stroke .90; ICC = validity; point 10-item and
SM, Farran survivors .66 Factor Likert 15-item tool;
CJ, analysis data Scale Contact
Williams provided author for tool
LS (2006)
Brief Glajchen USA Caregivers N=102 Cronbach‟s Demonstrated 14-item Negative Tool available 3
Assessment M, of patients alpha = .70 concurrent tool; 4- personal in the
Scale for Kornblith with chronic to .80 validity point impact Appendix;
Caregivers A, Homel illness Likert scale The BASC
(BASC) P, Fraidin has an 8-item
L, negative
Mauskop personal
A, impact
Portenoy subscale
RK (2005) (NPI)
Burden Reinhard USA Caregivers N=94; Cronbach‟s Demonstrated 19-item Objective Tool available 3
Assessment SC, of mentally N=94 alpha = .91 discriminant tool; burden; in the
Scale (BAS) Gubman ill adults and .89 validity; 4-point Subjective Appendix
GD, Factor Likert burden;
Horwitz analysis data scale; Can Worry
AV, provided be
Minsky S completed
(1994) by self or
by inter-
viewer
Ivarsson A, Sweden Caregivers N=256 Cronbach‟s Factor 19-item Activity 3
Sidenvall of alpha = .90 analysis data tool; 4- limitation;
B, Carlsson individuals provided point Feelings of
M (2004) with severe Likert scale worry
mental analogue;
disorders Social strain
Burden Index Miyashita Japan Caregivers N=646 Cronbach‟s Demonstrated 11-item Time- Items listed in 3
of Caregivers M, of patients alpha = face, tool; 5- dependent English in
(BIC) Yamaguchi with neuro- .91; ICC = concurrent point burden; Table 2; Items
A, Kayama logical .83 and Likert Emotional listed in
M, Narita diseases or convergent scale; burden; Japanese in
Y, Kawada stroke validity; Self-ad- Spiritual Figure 2
N, Factor ministered burden;
Akiyama analysis data question- Physical
M et al provided naire burden;
(2006) Service-
related
burden;
Total care
burden
Burden Roud H, New Caregivers N=45 Demonstrated 18-item Personal 3
Interview Keeling S, Zealand of people convergent tool; 5- Strain;
Sainsbury with validity point Role Strain
R (2006) dementia Likert scale
Burden of Care Hobbs TR USA Black, N=100 Results of 9-item 3
(1997) caregiving Path Model modified
mothers listed version of
ofadult “Patient
schizo- Behavior”
phrenic Scale
children
Burden on Pai S, India Family N=40 Test-Retest 24-item Tool listed in 3
Family Kapur RL members of N=24 reliability = tool; 3- the Appendix
Interview (1981) psychiatric .72; point scale;
Schedule patients Interrater Semi-
reliability = structured
.87 to .99 interview
Burden Ohaeri JU, Nigeria Caregivers N=73 Demonstrated 32-item Objective Tool available 3
Questionnaire Campbell of female content and tool; 4- burden; by request to
OB, cancer convergent point Subjective authors
Ilesanmi patients validity Likert burden
AO, scale;
Omig- Yoruba
bodun AO language
(1999) translation
information
provided
Burden Scale – Lim YM, Korea Family N=37 Cronbach‟s Path analysis 19-item Objective In this study 3
Korean (BS-K) Ahn Y caregivers alpha = .84 was used tool; 5- burden; only the 9-
(2003) of schizo- point Subjective item
phrenics Likert scale burden subjective
burden
subscale used
Caregiver Struchen USA Caregivers N=241 Cronbach‟s Demonstrated 35-item Perceived Four Factor 3
Appraisal MA, of adults alpha = .91 content and tool; 7- burden; scales,
Scale (CAS) Atchison with for concurrent point Caregiving including a
TB, Traumatic Perceived validity; Likert scale relationship 15-item
Roebuck Brain Injury burden Factor satisfaction; Perceived
TM, analysis data Caregiving burden scale
Caroselli provided ideology;
JS, Sander Caregiving
AM mastery
(2002)
Caregiver Novak M, Canada Caregivers N=107 Demonstrated 24-item Time- Items 3
Burden Guest C of confused content tool dependence available in
Inventory (1989) or validity; burden; Table 2;
(CBI) disoriented Factor Develop- Authors
older people analysis data mental constructed a
provided burden; Caregiver
Physical Burden
burden; Profile on
Social burden; subjects based
Emotional on CBI scores
burden
Caserta USA Caregivers N=160 Cronbach‟s Demonstrated 24-item Time- 3
MS, Lund of adults alpha = .69 concurrent tool; 5- dependence
DA, to .87 validity point burden;
Wright SD Likert scale Develop-
(1996) mental
burden;
Physical
burden;
Social burden;
Emotional
burden
Chou K Taiwan Primary N=150 Cronbach‟s 24-item Physical Tool listed in 3
(1997) caregivers alpha = tool; 5- burden; Appendix M;
of relatives .82 to .93 point Emotional Further
with Likert burden; psychometric
dementia scale; Social burden; data provided
Chinese Financial in Chou K,
language burden LaMontagne
translation LL, Hepworth
information JT (1999) and
provided Chou K,
Chyun L, Chu
H (2002)
Schwiebert USA Caregivers N=123 Cronbach‟s Factor 24-item Time- 3
VL, of alpha = .90 analysis data tool; 5- dependence
Giordano Alzheimer‟s provided point burden;
FG, disease Likert scale Develop-
Zhang G, patients mental
Scalander burden;
KA (1998) Physical
burden;
Social burden;
Emotional
burden;
Health burden
Chio A, Italy Caregivers N=60 Demonstrated 24-item Time- 3
Gauthier A, of patients convergent tool; 5- dependence
Calvo A, with ALS validity point burden;
Ghiglione Likert scale Develop-
P, Mutani mental
R (2005) burden;
Physical
burden;
Social burden;
Emotional
burden
McCleery Canada Family N=113 Cronbach‟s Demonstrated 24-item Time- Tool available 3
A, members of alpha = .92 concurrent tool; 5- dependence in Appendix
Addington psychosis to .94 validity point burden; A
J, patients Likert scale Develop-
Addington mental
D (2007) burden;
Physical
burden;
Social burden;
Emotional
burden
Caregiver Macera USA Family N=82 Cronbach‟s Demonstrated 15-item Tool available 3
Burden Scale – CA, Baker members of alpha = .87 concurrent tool; Three in the
I ED, patients validity Yes/No Appendix
Jannarone with answer
RJ, Davis Alzheimer‟s columns
DR, disease and a line
Stoskopf for „Why‟
CH (1993) for each
item
Caregiver Stolarik A, Canada Caregivers N=124 Cronbach‟s 15-item Demands of 3
Burden Scale – Lindsay P, of patients alpha = .94 tool; 15 care were
II Sherrard H, who had items are compared at
Woodend coronary tasks; one week and
AK (2000) artery 5-point six weeks post
bypass Likert scale discharge
grafting
Caregiver Andren S, Sweden Family N=153 Factor 22-item General 3
Burden Scale – Elmstahl S members of analysis data tool; 4- strain;
III (2005) patients provided point Isolation;
with Likert scale Disappoint-
dementia ment;
living at Emotional
home involvement;
Environment
Caregiver Kao HS, Taiwan Caregivers N=148 Cronbach‟s Demonstrated 20-item 5 factors were Original 3
Burden Scale – Acton GJ of elders alpha = .92 convergent tool; Likert reduced to 3 Caregiver
IV (2006) with a validity; scale; 15 factors: Burden Scale
stroke Factor minutes to Awareness of listed in Table
analysis data complete degeneration 1
provided of both care
receiver &
giver;
Time and
finance
constraints &
readjustment;
Guilt & blame
Caregiver Cifu DX, USA Caregivers N=49 Demonstrated Visual 3
Distress Scale Carne W, of concurrent Analogue
(CDS) Brown R, Parkinson‟s and Scale: 1 to
Pegg P, patients convergent 10
Ong J, validity
Qutu-
buddin A
et al
(2006)
Caregiver Love A, Australia Caregivers N=75 Cronbach‟s Demonstrated 50-item Receive 3
Network Scale Street A, of people alpha = .77 face and tool; 5- support;
Ray R, living with to .92 content point Self-care;
Harris R, ALS validity Likert scale Caregiver
Lower R satisfaction;
(2005) Stress on
relationships
Caregiver Weitzner USA Family N=263 Cronbach‟s Demonstrated 35-item Items listed in 3
Quality of Life MA, caregivers alpha = face, content, tool; 5- Table 1
Index-Cancer Jacobsen of patients .91; Test- concurrent, point
(CQOLC) PB, with cancer Retest = convergent Likert
Wagner H, .95 and scale; 10
Friedland J, discriminant minutes to
Cox C validly complete
(1999)
Caregiver Given CW, USA Caregivers N=377 Cronbach‟s Demonstrated Tool Caregiver Items listed in 3
Reaction Given B, of elderly alpha = .80 content and reduced esteem; Table 2
Assessment Stommel patients to .90 concurrent from 40 to Impact on
(CRA) M, Collins with validity; 24 finance;
C, King S, physical Factor questions; Impact on
Franklin S. impair- analysis data Likert scale health:
(1992) ments, provided Impact on
Alzhiemers‟ schedule;
disease or Lack of
cancer family
support
Nijboer C, Nether- Partners of N=181 Cronbach‟s Demonstrated 24-item Esteem; Items 3
Triemstra lands colorectal alpha = .62 construct tool; 5- Finance; available in
M, cancer to .83 validity point Health; Table 5
Tempelaar patients Likert Schedule;
R, scale; Support
Sanderman Face-to-
R, van den face
Bos GA. interview;
(1999) < 10
minutes to
complete;
Dutch
language
translation
information
provided
Van Exel Nether- Informal N=148 Demonstrated 24-item Esteem; 3
NJ, Scholte lands caregivers convergent tool Finance;
op Reimer of stroke validity Health;
WJ, patients Schedule;
Brouwer Support
WB, van
den Berg
B,
Koopmans-
chap MA,
van den
Bos GA
(2004)
de Frias Canada Family N=133 Cronbach‟s Factor 24-item Esteem; 3
CM, members of alpha = analysis data tool; 5- Finance;
Tuokko H, geriatric .67 to .86 provided point Health;
Rosenberg care Likert scale Schedule;
T (2005) services Support
Grater JJ USA Older N=66 Cronbach‟s Demonstrated 24-item Esteem; Full text 3
(2005) spousal alpha = .83 concurrent tool; 5- Finance; available in
caregivers validity point Health; Appendix B3
of oncology Likert scale Schedule;
patients Support
Grov EK, Norway Caregivers N=85 Cronbach‟s Demonstrated 24-item Esteem; Items 3
Fossa SD, of cancer alpha = .74 concurrent tool; 5- Finance; available in
Tonnessen patients validity; point Health; Table 2
A, Dahl Factor Likert Schedule;
AA (2006) analysis data scale; Support
provided Norwegian
language
translation
information
provided
Bachner Israel Bereaved N=236 Demonstrated 24-items Scheduling “The 3
YG, primary concurrent expanded impact; Modified
O‟Rourke caregivers validity; to 31- Social support Hebrew
N, Carmel of recently Factor items; 5- impact; Language
S (2007) deceased analysis data point Health Version of the
cancer provided Likert scale impact; CRA”
patients Self-esteem; available in
Financial Table 2;
impact Evaluated
caregiving
and post-
caregiving
reactions
Caregiver Risk Huyck USA Family N=67 Cronbach‟s Demonstrated 12-item Monitor‟s 3
Screen (CRS) MH, caregivers alpha = .85 convergent tool; 4- family strain;
Ayalon L, of impaired and .84 validity point Items
Yoder J elders Likert scale available in
(2007) the Appendix
Caregiver Robinson USA Caregivers N=81 Cronbach‟s Demonstrated 13-item Tool available 3
Strain Index BC (1983) of recently alpha = .86 concurrent tool; yes/no in Table 1
(CSI) hospitalized validity answers;
hip surgery Interview
and heart
patients
aged 65 and
over
Van Exel Nether- Informal N=148 Demonstrated 13-item Tool available 3
NJ, Scholte lands caregivers convergent tool; yes/no in Appendix
op Reimer of stroke validity answers
WJ, patients
Brouwer
WB, van
den Berg
B,
Koopmans-
chap MA,
van den
Bos GA
(2004)
Caregiver Schwarz USA Caregivers N=100 Cronbach‟s 48-item Exhaustion; 3
Strain KA, Blixen to impaired alpha = .92 tool Emotional
Questionnaire CE (1997) older adults arousal;
Discrepancy
with ideal
states
Caregiver Brannan USA Families of N=984 Cronbach‟s Demonstrated 21-item Objective Items listed in 3
Strain AM, children alpha = .93 convergent tool; 5- caregiver Table 1
Questionnaire Heflinger with validity; point strain;
(CGSQ) CA (1997) emotional Factor Likert Internalized
and analysis data scale; Self- and
behavioral provided report externalized
disturbances subjective
caregiver
strain; Global
measure of
caregiver
strain
Caregiver Mont- USA Caregivers N=80 Cronbach‟s 22-item Objective Items listed in 3
Subjective and gomery RJ, of elderly alpha = .85 tool; 5- burden; Appendix A
Objective Gonyea JG, relatives and .86 point Subjective and B
Burden Scale Hooyman Likert scale burden
(CSOB) NR
(1985)
Caregiving Lawton USA Caregivers N=632 Cronbach‟s Demonstrated Tool Subjective Original 47 3
Appraisal MP, of disabled N=239 alpha = .85 convergent reduced burden; items
Kleban older people and .87; validity; from 47 to Caregiving available in
MH, Moss Test-Retest Factor 28 to 19 satisfaction; Table 2
M, = .78 analysis data items; 5- Impact of
Rovine M, provided point caregiving
Glicksman Likert
A (1989) scale; 90
minutes to
complete;
Interview
Sevick M, USA Primary N=27 Cronbach‟s Demonstrated 43-item Burden; Tool referred 3
Sereika S, family alpha = .65 face validity tool; 5- satisfaction; to as
Matthews caregivers to .87 point Impact; “Modified
JT, of home- Likert Mastery; Caregiving
Zucconi S, based scale; Ideology Appraisal
Wielobob, ventilator- Survey is Scale”
C, dependent 20 pages
Puczynski, patients
S et al
(1994)
Caregiving Fuh J, Taiwan Caregivers N=76 Cronbach‟s Demonstrated 20-item Items listed in
Burden Scale Wang S, of alpha = .85 concurrent tool; 4- Table 3
(CBS) Liu H, Alzheimer‟s validity point rating
Wang H disease scale;
(1999) patients Mandarin
language
translation
information
provided
Caregiving Kinney JM, USA Primary N=60 Cronbach‟s Demonstrated 110-item Assistance in Items and 3
Hassles Scale Stephens family alpha = concurrent tool basic ADL; subscales
MA (1989) caregivers .91; Test- validity reduced to Assistance listed in Chart
to Retest = 42 items; with 1
Alzheimer‟s .83 4-point instrumental
disease Likert scale ADL; Care-
patients recipient‟s
cognitive
status; care-
recipient‟s
behavior;
Caregiver‟s
support
network
Caregiving Orbell S, United Caregivers N=108 Cronbach‟s Demonstrated 31-item Care work Only two of 3
Impact Scale Hopkins N, Kingdom of elderly alpha = .80 concurrent, tool strain; the four
Gillies B people and .95 predictive and Care work factors
(1993) convergent satisfaction; measure
validity Relationship burden
dis-
satisfaction;
Care lifestyle
satisfaction
Caregiving Abe K Japan Family N=219 Demonstrated 12-item Social Tool available 3
Stress (2007) caregivers convergent tool; 4- constraint; in Appendix
Appraisal validity point Physical A
(CSA) Likert exhaustion
scale; Self-
completed
question-
naire
CarerQol Brouwer Nether- Informal N=175 Demonstrated 7 broad Fulfillment; Tool available 3
Instrument WB, van lands caregivers concurrent questions Relational in Figure 1
Exel NJ, validity and 1 problems;
van Gorp Visual Mental
B, Redekop Analogue problems;
WK Scale Problems with
(2006) question; daily
Dutch activities;
language Financial
translation problems;
information Support;
provided Physical
problems
Carers Charles- United Family N=232 Cronbach‟s Factor 30-item Impact; Items listed in 3
Assessment of worth GM, Kingdom carers of alpha >.65 analysis data tool; 3- Physical help; Table 1
Difficulties Tzimoula people with for most provided point Relationship;
Index (CADI) XM, dementia factors Likert Social life
Newman scale; restrictions;
SP (2007) Takes 25 Professional
minutes to support;
complete Family
support;
Interpersonal
demands;
Finances
Carers of Older McKee KJ, Europe Caregivers N=577 Demonstrated 17 -item Negative Original 3
People in Philip I, of older face, content version of impact; COPE Index
Europe (COPE Lamuri G, people and the COPE Positive value in Table 2.
Index) Prouskas discriminant Index; 15-item
C, Oberg validity 4-response version of
B, Krevers categories; revised index
B (2003) Italian, available in
Greek, Appendix
Swedish
and Polish
language
translation
information
provided
Roud H, , New Caregivers N=45 Demonstrated 15-item Negative Items listed in 3
Keeling S, Zealand of people convergent tool; 4- impact; Table 3
Sainsbury with validity response Positive value
R (2006) dementia categories
Carers‟ Needs Wancata J, Austria Carers of N=45 Cronbach‟s Demonstrated 18 problem Assesses the 3
Assessment for Kraut- dementia N=40 alpha = .70 content, areas; 3- needs of
Dementia gartner M., patients N=40 to .95 concurrent point and dementia
(CNA-D) Berner J, and 4-point caregivers;
Alexandro convergent scales Items listed in
wicz R, validity used; Table 1
Unger A, Semi-
Kaiser G structured
(2005) research
interview
Child and Messer SC, USA Family N=349 Cronbach‟s Demonstrated 20-items, 3 Economic Tool (CABA 3
Adolescent Angold A, caregivers alpha > convergent and 4-point Burden; Parent
Burden Costello of children .80; ICC = validity; scales; 10 Impact on Interview
Assessment EJ, Burns with 0.67 Factor minutes to family Version 1.0)
(CABA) BJ (1996) psychiatric analysis data complete relationships; available in
disorders provided Impact on Appendix
other
relationships;
Restrictions
on activities;
Responsibility
for problems;
Impact on
feelings of
well-being
Cost of Care Kosberg JI, USA Informal N=127 Cronbach‟s 20-item Personal and Tool available 3
Index Cairl RE, caregivers alpha = .79 tool; 4- social in Figure 1
Keller DM of point restrictions;
(1990) Alzheimer‟s Likert scale Physical and
disease emotional
patients problems;
Economic
costs; Value
investment in
caregiving,
Care recipient
as
provocateur

Cost of Care Tseh OY, Hong Informal N=111 Cronbach‟s Demonstrated 20-item Personal and Items listed in 3
Index – Loke Yuen Kong caregivers alpha = .93 content and tool; 5- social Table 1
Chinese A, Chan of elderly concurrent point scale; restrictions;
Version MF, Kwok relatives validity 30 to 45 Physical and
T (2005) minutes to emotion
complete; health;
Tool Economic
already costs; Value
translated investment in
in Chinese caregiving;
Care recipient
as
provocateur;
Dementia O‟Donovan United Carers of N=109 Cronbach‟s Demonstrated 40-item Life upset; Tool available 3
Caregiving ST (2004) Kingdom people with alpha = concurrent tool; 5- Personal within paper
Burden dementia .84; Split validity point distress;
Questionnaire Half = .76 Likert scale Negative
(DCBQ) feelings;
Positive
feelings
Experience of Szmukler Australia Caregivers N=359 Cronbach‟s Demonstrated 66-item Difficult Items listed in 3
Caregiving GI, of relatives alpha = .74 content tool; 10 to behaviors; Table 2
Inventory Burgess P, with serious to .91 validity 15 minutes Negative
(ECI) Herrman mental to complete symptoms;
H, Benson illness Stigma;
A, Colusa Problems with
S, Bloch S services;
(1996) Effects on
family; Need
to provide
backup;
Dependency;
Loss; Positive
personal
experiences;
Good aspects
of
relationship
Lemoine Canada Caregivers N=405 Factor 66 items Difficult Items 3
O, Lavoie of persons analysis data reduced to behaviors; available in
S, Poulin with a provided 45 items; Negative Table 3
C, Poirier mental 5-point symptoms;
L, Fournier health Likert Stigma;
L (2005) problem scale; Problems with
French services;
language Effects on the
translation family; Need
information to provide
provided back up; Loss;
Positive
personal
experiences
Tarricone I, United Carers of N=164 Cronbach‟s Demonstrated 66-item Difficult 3
Leese M, Kingdom patients alpha = convergent tool; behaviors;
Szmukler and Italy suffering .71 to .86 validity Italian Negative
GI, Bassi from a language symptoms;
M, Berardi functional translation Stigma;
D (2006) psychiatric information Problems with
disorder provided services;
Effects on the
family; Need
to provide
backup;
Dependency;
Loss;
Positive
personal
experiences;
Good
relationship
with the
patient
Family Cooper B, Australia Caregivers N=160 Cronbach‟s Demonstrated 26 items Caregiver Items listed in 3
Appraisal of Kinsella of relatives alpha = .73 content and reduced to strain; Table 1
Caregiving GJ, Picton with cancer to .86 concurrent 25-item Caregiver
Questionnaire C (2006) validity; tool; 5- distress;
for Palliative Factor point Positive
Care analysis data Likert scale caregiving;
(FACQ-PC) provided Family well-
being
Family Burden Bandeira Brazil Relatives of N=243 Cronbach‟s 52-item Assistance to Measures 3
Interview Scale M, psychiatric alpha = .58 tool; 5- the patient; global
– Brazilian Calzavar patients to .90; point Patient objective
version MG, Test-Retest Likert supervision; burden and
(FBIS-BR) Freitas LC, = .54 to .92 scale; 60 Financial global
Barroso minutes to burden; subjective
SM (2007) complete Impact on burden
family
routine;
Worries about
the patient
Family Burden Chien W, China Family N=185 Cronbach‟s Demonstrated 25-item Family Items in this 3
Interview Norman I caregivers alpha= .87; face, content, tool; 3- finance; scale address
Schedule (2004) of Test-Retest concurrent, point Family major issues
(FBIS) psychiatric = .83; ICC convergent Likert routine; of family
patients = .87 and scale; Interactions; caregiving
discriminant Semi- Leisure common to
validity structured activities; many
Interview Mental health; cultures;
Schedule; Physical Items listed in
15 minutes health Table 4
to
complete;
Chinese
language
translation
information
provided
Siu BW, Hong Caregivers N=77 Cronbach‟s Demonstrated 25-item Family Some 3
Yeung TM Kong of patients alpha = content, tool; 3- finance; modified
(2005) with .90; Test- concurrent point Family questions
Obsessive- Retest = and Likert routine; listed in Table
compulsive .97 to .99; convergent scale; 45 Interactions; 3
Disorder Split Half validity minutes to Leisure
= .92; complete; activities;
Interrater Cantonese Mental health;
reliability = language Physical
.98 to .99; translation health
Kappa information
Statistic = provided
.84 to 1.0;
ICC = .99
Family Burden Burgess United Mothers of N=99 Cronbach‟s Demonstrated 27-item 3
of Injury ES, Drotar States school-aged alpha = concurrent, tool; 5-
Interview D, Taylor children .90; Test- predictive and point
(FBII) HG, Wade who Retest = discriminant Likert scale
S, Stancin experienced .52 to .73; validity
T, Yeates traumatic Guttman‟s
KO (1999) head = .80
injuries
Family Burden Madianos Greece Relatives of N=171 Cronbach‟s Demonstrated Tool Impact on 23 items listed 3
Scale M, patients alpha = content, reduced daily in Table 3
(FBS) Economou with schizo- .85; Test- concurrent from 45 to activities/
M, Dafni phrenia Retest = and 35 to 23 social life;
O, Koukia .88 to .95 discriminant items; 3- Aggressive-
E, Palli A, validity; point ness;
Rogakou E Factor Likert Impact on
(2004) analysis data scale; 28.5 health;
provided minutes to Economic
complete burden
Family Vilaplana Spain Main family N=205 Cronbach‟s Demonstrated 4-5 point Assistance in Complete 3
Objective and M, Ochoa caregivers alpha = .85 concurrent Likert daily life ECFOS-II
Subjective S, Martinez of schizo- validity; scale; Self- activities; interviews can
Burden A, Villalta phrenic Factor or hetero- Concerns; be obtained
Interview – V, patients analysis data adminis- Impact on from the
Spanish Martinez- provided tered daily author
Version Leal R, interview; activities;
(ECFOS-II) Puigdollers 30 minutes Supervision
E et al to complete
(2007)
Family Strain Ferrario Italy Caregivers N=296 Cronbach‟s Demonstrated 44-item; Emotional 1st and 2nd 3
Questionnaire SR, Baiardi N=409 alpha = .87 convergent yes/no burden; Social Versions of
(FSQ) P, Zotti and answers; involvement; the Family
AM discriminant semi- Knowledge of Strain Quest-
(2004) validity; structured the disease; ionnaire are in
Factor interview; Family Appendix A
analysis data 20 minutes relationships;
provided to complete Thoughts
about death

Family Stress Nachshen Canada Parental N=106 Cronbach‟s Demonstrated 23-item Measures 3
and Coping JS, caregivers alpha = face and quantitative experiences of
Interview Woodford of children .89; Test- discriminant questions, parents of
(FSCI) L, Minnes and adults Retest = validity 5-item children with
P (2003) with .80 qualitative develop-
develop- questions; mental
ment 5-point disabilities;
disabilities Likert Quantitative
scale; 1 ½ and
hours to 3 Qualitative
hours to tools in
complete Appendix I
and II
Given‟s Gallagher- USA Latino N=70 35 items in Scheduling 2
Burden Scale Thompson family care- tool; 5- problems;
D, Arean P, givers of point Poorer health;
Rivera P, dementia Likert Financial
Thompson patients scale;
LW (2001) Spanish
language
translation
information
provided
Global Role Farran CJ, USA Caregivers N=215 Cronbach‟s Demonstrated 3-item tool; 3
Strain Scale Miller BH, of persons alpha = .79 concurrent 4-point
Kaufman with validity scale
JE, Davis L dementia
(1997)
Korean version Lee J, Korea Primary N=147 Cronbach‟s Demonstrated 27-item Burden; 27-items 3
of the Revised Friedmann family alpha = .86 face validity; tool; 5- Satisfaction; listed in Table
Caregiving E, Picot SJ, caregivers Factor point Mastery; 2
Appraisal Thomas of older analysis data Likert Impact;
Scale (K- SA, Kim stroke provided scale; Self- Demand
RCAS) CJ (2007) survivors admin-
istered; 30
to 40
minutes to
complete;
Korean
language
translation
information
provided
Life Situation Larson J, Sweden Spouses of N=99 Cronbach‟s Demonstrated 13-item Worries; Modified 3
among Spouses Franzen- stroke alpha = .80 construct and tool; 5- Powerless- from the
after a Stroke Dahlin A, survives concurrent point ness; “Care Burden
Event (LISS) Billing E, validity; Likert scale Personal Scale for
Murray V, Factor adjustment; Relatives”;
Wredling R analysis data Social Items listed in
(2005) provided isolation Table 5
Modified Thornton USA Family N=158 Cronbach‟s Demonstrated 13-item Modified 3
Caregiver M, Travis caregivers alpha = content tool; 3 Caregiver
Strain Index SS (2003) .90; Test- validity nominal Strain Index
(Modified CSI) Retest = answers in Table 1
.88
Montgomery Mont- USA Family Cronbach‟s 9-item tool; Objective 2
Borgatta gomery RJ, caregivers alpha = .73 5-point burden;
Burden Scale Borgatta of impaired to .94 scale Subjective
EF (1989) elderly burden
persons
Novel Elmstahl S, Sweden Family N=150 Cronbach‟s Factor Tool General 22-item tool 3
Caregiver Malmberg caregivers alpha = .70 analysis data reduced strain; listed in
Burden Scale B, of stroke to .87; provided from 24 to Isolation; Appendix
(CB scale) Annerstedt patients Kappa 22 items; Disappoint-
L (1996) Statistic = 4-point ment;
.89 to 1.00 Likert scale Emotional
involvement;
Environment
Oberst Bakas T, USA Family N=116 Cronbach‟s Demonstrated 15-item Tool available 3
Caregiving Austin JK, caregivers alpha = .90 concurrent scale with in Figure 1
Burden Scale Jessup SL, of stroke and .94 and predictive 2
(OCBS) Williams survivors validity; measures;
LS, Oberst Factor 5-point
MT (2004) analysis data Likert scale
provided
Objective Struchen USA Caregivers N=241 Demonstrated 25-item Assesses 3
Burden Scale MA, of adults concurrent tool; yes/no concrete
Atchison with validity answers problems that
TB, Traumatic the caregiver
Roebuck Brain Injury perceives
TM,
Caroselli
JS, Sander
AM
(2002)
Overall Burden Nijboer C, Nether- Partners of N=181 Demonstrated One-item Assesses 3
Triemstra lands colorectal concurrent burden overall burden
M, cancer validity question;
Tempelaar patients 5-point
R, answer
Sanderman
R, van den
Bos GA
(1999)
Parental Illness Schrag A, England Children of N=89 Cronbach‟s Demonstrated Tool Social 38-items 3
Impact Scale Morley D, patients alpha = .62 content and reduced development, listed in Table
(Parkinson‟s Quinn N, with to .91 concurrent from 53 to independence 2
Disease) Jahanshahi Parkinson‟s validity; 38 items; and
(PIIS-PD) M (2004) disease Factor 5-point responsibility;
analysis data Likert scale Burden of
provided daily help;
Communi-
cation and
under-
standing;
Impact on
personal
future; Impact
on family
functioning;
Friend‟s
reactions
Perceived Gupta R India Caregivers N=259 Cronbach‟s Demonstrated Reduced Impact on 12-items 3
Caregiver (2007) of elderly alpha = .77 face and from 31 to finances; listed in Table
Burden Scale people to .82 concurrent 17 to 12 Abandon- 2
(PCB-12) validity; items; 4- ment by
Factor point extended
analysis data Likert family;
provided scale; 1-2 Sense of
hours for entrapment
interview;
Hindi
language
translation
information
provided
Perceived Levene JE, Canada Caregivers N=40 Test-Retest Demonstrated Increased 24-items 3
Family Burden Lancee WJ, of a N=38 = .53 content, from 15 to listed in Table
Scale (PFBS) Seeman mentally ill concurrent, 45 items 1
MV (1996) relative predictive and then
discriminant reduced to
validity 35 to 24
items; 4-
point
Likert scale
Tsang HW, Hong Caregivers N=21 Cronbach‟s 24-item 24-items 3
Chan AS, Kong of alpha = tool; listed in
Chung individuals .85; Test- 4-point Tables 1, 2 &
AW, Lam with schizo- Retest = Likert; 15 3; Tool
EC, Ting phrenia .86 to 20 referred to as
SO (2006) minutes to “ Chinese
complete; version of the
Tool Perceived
already Family
translated Burden Scale”
in Chinese (CPFBS)
Perceived Schwarz USA Family N=75 Cronbach‟s Demonstrated 14-item 14-items 3
Stress Scale KA, caregivers alpha = .87 concurrent tool; 5- listed in Table
(PSS) Dunphy G of adults validity; point 3; Assesses
(2003) age 65 or Factor Likert scale perception of
older with analysis data global life
heart failure provided stress rather
than specific
stressful
events or
situations
Poulshock and Poulshock USA Caregivers N=614 Demonstrated 3
Deimling SW, of elders concurrent
Burden Deimling validity;
Measure GT (1984) Factor
analysis data
provided
Lim YM, USA Anglo- and N=39; Cronbach‟s Demonstrated Spanish Disruptive Tool referred 3
Luna I, Mexican N=100 alpha >.80 content language behavior; to as
Cromwell American validity; Path translation Social “Poulshock
SL, Phillips caregivers Model listed information functioning; and Deimling
LR, Russell of elders provided Negative Burden Scale”
CK, de changes in
Ardon ET relationships;
(1996) Social activity
restriction;
Cognitive
incapacity;
ADL
impairment
Phillips USA Caregivers N=226 Cronbach‟s Demonstrated Activities of Tool referred 3
LR, of elders N=127 alpha = .78 concurrent daily living; to as “The
Brewer to .81 validity Cognitive Burden Scale”
BB, incapacity;
de Ardon Social
ET (2001) function;
Disruptive
behavior;
Elder-care-
giver-family
relationship
change;
Social
restriction
Professional McCarty USA Caregivers N=22 Cronbach‟s Demonstrated Reduced Physical 16-items 3
Caregiver EF, of N=52 alpha = .90 content and from 40 to burden; listed in Table
Burden Index Drebing C Alzheimer‟s N=43 to .94; concurrent 24 to16 Emotional 2; Completed
(PCBI) (2002) disease Test-Retest validity items; 4- burden; Loss by nursing
patients = .72; Split point of empathy/ staff
Half = .90 response Detachment;
to .94 Development
of negative
job attitude/
competence
Relative Stress Greene JG, England Carers of N=38 Test-Retest Demonstrated 15-item Personal 15-items 3
Scale Smith R, elderly = .85 concurrent tool; 5- distress; listed in Table
(RSS) Gardiner relatives validity; point Domestic II
M, with Factor Likert scale upset;
Timbury dementia analysis data Negative
GC (1982) provided feelings
Thom- Norway Spouse N=186 Cronbach‟s Demonstrated 15-item Personal 15 items listed 3
messen B, carers of alpha = .94 concurrent tool; 5- distress; in Table 2; 8-
Aarsland stroke, mild validity; point Life upset; items for
D, dementia Factor Likert scale Negative Psycho-social
Braekhus and analysis data feelings Burden listed
A, Oksen- Parkinson‟s provided in Table 3
gaard AR, disease
Engedal K, patients
Laake K
(2002)
Ulstein I, Norway Carers of N=196 Cronbach‟s Demonstrated 15-item Emotional 15 items listed 3
Wyller TB, patients alpha = .70 concurrent tool; 5- distress; in Table 2
Engedal K with to .86 validity point Social
(2007) dementia Likert scale distress;
Negative
feelings
Screen for Vitaliano USA Spouses of N=191 Cronbach‟s Demonstrated 25-item Objective 25 items 3
Caregiver PP, Russo patients alpha = .84 face, content, tool; 5- burden; available in
Burden (SCB) J, Young with to .89; concurrent point Subjective Table 2
HM, Alzheimers Test-Retest and Likert scale burden
Becker J, Disease = .64 to .70 discriminant used, with
Maiuro RD validity summated
(1991) total scores
King AC, USA Family N=22 Cronbach‟s Demonstrated 25-item Objective 2
Brassing- caregivers alpha = .75 concurrent tool; 4- burden;
ton G and .81 validity point Subjective
(1997) Likert scale burden
used with
summated
total scores
Chou K Taiwan Caregivers N=10 Cronbach‟s Demonstrated 25-item Objective 3
(1997) N=10 alpha = .91 concurrent tool; 5- burden;
N=21 to .93; and point Subjective
Test-Retest discriminant Likert scale burden
= .81 and validity used with
.84 summated
total
scores;
Chinese
language
translation
information
provided
Hirschman USA Caregivers N=251 Cronbach‟s Demonstrated Full scale Shortened 7 3
KB, Shea of alpha = .86 concurrent has 25 item tool
JA, Xie Alzheimer (shortened and items; listed in
SX, disease scale) and discriminant Shortened Appendix 1;
Karlawish patients .88 (full validity scale has 7 Full 25 item
JH (2004) scale) items; 5- tool in Table
point 1; Shortened
Likert scale tool referred
to as “Rapid
Screen for
Caregiver
Burden”
Self-Rated Van Exel Nether- Informal N=148 Demonstrated Single Tool available 3
Burden (SRB) NJ, Scholte lands caregivers convergent question; in Appendix
op Reimer of stroke validity 100-point
WJ, patients visual
Brouwer analogue
WB, van scale
den Berg
B,
Koopmans-
chap MA,
van den
Bos GA
(2004)
Sekentei Scale Asai MO, Japan Family N=266 Cronbach‟s Demonstrated Reduced Tool listed in 3
Kameoka and caregivers alpha = .95 face, content, from 53 to Appendix;
VA (2007) USA of elders concurrent 52 to 43 to Social
and 32 items; construct that
discriminant 4-point causes a
validity Likert person to
scale; worry about
Japanese others‟
language evaluation of
translation their behavior
information
provided
Sekentei Scale Asahara K, Japan Family N=260 Cronbach‟s Factor From 26 to Conformance Structure of 3
for Caregivers Momose Y, caregivers alpha = analysis data 19 to 12 to social 12-item scale
(SCC) Murashima of impaired .93 provided item tool; norms; listed in
S, Okubo elders 4-point Worry about Figure
N, Magilvy Likert being seen;
JK (2001) scale; Acceptance of
traditional
social norms
Sense of Scholte op Nether- Partners of N=166 Cronbach‟s Demonstrated 27 item Satisfaction 27 items listed 3
Competence Reimer lands stroke alpha = content tool; 4- with care in Appendix
Questionnaire WJ, de patients .83; ICC = validity; point recipient;
(SCQ) Haan RJ, .93 Factor Likert Satisfaction of
Pijnenborg analysis data scale; 15 to performance
JM, provided 20 minutes as caregiver;
Limburg to complete Conse-
M, van den quences of
Bos GA involvement
(1998) in care
Van Exel Nether- Informal N=148 Demonstrated 27-item Satisfaction 3
NJ, Scholte lands caregivers convergent tool with care
op Reimer of stroke validity recipient;
WJ, patients Satisfaction of
Brouwer performance
WB, van as caregiver;
den Berg Consequences
B,
Koopmans-
chap MA,
van den
Bos GA
(2004)
Strain Visual Mc- United Primary N=70 Demonstrated 10 cm Addresses 3
Analogue Pherson, Kingdom caregivers convergent visual how much
Scale KM, of severely and analogue strain the
Pentland B, brain discriminant scale with carer has
Mc- injured validity no strain =
Naughton individuals 0 cm,
HK (2000) severe
strain = 10
cm
Subjective and Mont- USA Caregivers N=80 Cronbach‟s Demonstrated 22-item Objective Items listed in 3
Objective gomery RJ, of elderly alpha = .85 concurrent tool; 5- burden; Appendix A
Family Burden Gonyea JG, relatives and .86 validity point Subjective and B
Interview Hooyman Likert burden
(SOFBI) NR (1985) scale;
Structured
interviews;
45 minutes
to complete
Subjective and Martorell Spain Caregivers N=166 Cronbach‟s Demonstrated Semi- Assistance Items listed in 3
Objective Pereda A, of adults alpha = convergent structured with everyday Table 4
Family Burden Salvador- with .88; Test- validity; interview; activities;
Interview Carulla L, intellectual Retest = Factor 30 minutes Behavioural
(SOFBI/ Ochoa S, disabilities .48 to .79; analysis data to complete problems;
ECFOS) Ayuso- Interrater provided Emotional
Mateos JL reliability concerns;
(2007) .78 to 1.00 Impact on the
caregiver‟s
functioning
Subjective Matsuda O Japan Family N=255 Cronbach‟s Demonstrated 14-item 14 items listed 3
Burden Scale (1999) caregivers alpha = concurrent tool; 5- in Appendix
of elderly .87; Test- and predictive point
relatives Retest = validity Likert
with .72; Split- scale; Self-
dementia Half = .80 admin-
istered; 10
minutes to
complete
Swedish Ostman M, Sweden Caregivers N=27 Test-Retest Demonstrated 59-items; 46 items listed 3
Family Burden Hansson L of mentally = .05 to content 46-items in Table 1
and (2000) ill family 1.00; validity measured
Participation in members Interrater burden and
Care reliability = participa-
.98 tion; semi-
structured
interview
Zarit Burden Zarit SH, USA Primary N=29 Demonstrated 29-item 29 items listed 3
Interview Reever KE, caregivers concurrent tool; Likert in Table 1;
(ZBI) Bach- of older validity scale Tool referred
Peterson J relatives to as “The
(1980) with senile Burden
dementia Interview”
Anthony- USA Caregivers N=184 Cronbach‟s Demonstrated 22-item Tool referred 3
Bergstone of dementia alpha = .79 concurrent tool; 5- to as “The
CR, Zarit patients validity point Burden
SH, Gatz Likert scale Interview”;
M (1988) Measures
perceived
impact of
caregiving on
financial
status,
physical
health,
emotional
health, and
social
activities
Buffum USA Spouses N=72 Cronbach‟s 22-item 22 items listed 3
MD (1992) caring for alpha = .93 tool; 5- in Appendix;
Alzheimer‟s point Tool referred
disease Likert scale to as
patients “Caregiver
Burden
Interview”
Arai Y, Japan Caregivers N=66 Cronbach‟s Demonstrated 22-item 22 items listed 3
Kudo K, of disabled alpha = concurrent tool; 5- in Appendix;
Hosokawa elderly .93; Test- validity point Tool referred
T, Washio retest = .76 Likert to as “Zarit
M, Miura scale; Caregiver
H, Japanese Burden
Hisamichi language Interview”
S (1997) translation
information
provided
Uttl B, USA Caregivers N=180 Cronbach‟s Demonstrated 22-item Tool referred 3
Santacruz of patients alpha = .91 discriminant tool; 5- to as “Burden
P, Litvan I, with validity point Interview”
Grafman J progressive Likert scale (BI22)
(1998) supra-
nuclear
palsy
Arai Y, Japan Caregivers N=45 Cronbach‟s Demonstrated Tool Tool referred 3
Washio M of elderly alpha = .93 concurrent already to as “Zarit
(1999) validity translated Caregiver
in Japanese Burden
Interview”
Hebert R, Canada Informal N=312 Cronbach‟s Demonstrated 22-item Personal Tool referred 3
Bravo G, caregivers alpha = .92 concurrent tool strain; to as “Zarit
Preville M of and .91; validity; reduced to Role strain Burden
(2000) community- Split Half Factor 12 items Interview”;
dwelling = .90 and analysis data for short Developed
older .91 provided version; short version
persons with 5-point of the tool;
dementia Likert Recommend-
scale; Tool ed new cut-off
already scores to
translated quality level
in French of burden
Bedard M, Canada Caregivers N=413 Cronbach‟s Demonstrated 12-item Tool referred 3
Molloy of alpha = .88 convergent short to as “Zarit
DW, cognitively and .78 validity; version of Burden
Squire L, impaired Factor the tool; Interview”;
Duboise S, adults analysis data 4-item Used 12-item
Lever JA, provided screening short version
O‟Donnell version of and developed
M (2001) the tool; 5- 4-item
point screening
Likert scale version; Items
provided in
Appendix
Phillips USA Caregivers N=249 Cronbach‟s Demonstrated 3
LR, Brewer of elders alpha = .90 concurrent
BB, de validity;
Ardon ET Factor
(2001) analysis data
provided
Scazufca Brazil Carers of N=82 Cronbach‟s Demonstrated 22-item Tool referred 3
M (2002) people with alpha = .87 concurrent tool; 5- to as
mental validity point Portuguese
illnesses Likert “Burden
scale; Interview”;
Portuguese Tool available
language in Table 1
translation
information
provided
Rivera- Spain Caregivers N=91 Demonstrated 22-item Tool referred 3
Navarro J, of patients concurrent tool; Tool to as
Morales- with validity already modified
Gonzalez demyelin- translated Spanish
JM, ating in Spanish version of the
Benito- disease “Zarit
Leon J; Caregiver
Madrid Burden
Demyelin- Interview”
ating
Diseases
Group
(GEDMA)
(2003)
Taub A, Brazil Informal N=50 Cronbach‟s 22-item Tool referred 3
Andreoli caregivers alpha = tool; to as
SB, of demented .77; Test- 5-point “Brazilian
Bertolucci patients Retest = Likert scale version of the
PH, (2004) .80; Zarit Burden
ICC = .88 Interview”
Kumamoto Japan Caregivers N=51 Demonstrated 8-item tool; Personal Tool referred 3
K, Arai Y of elderly convergent Tool strain; to as short
(2004) patients validity; already Role strain version of the
Factor translated “Japanese
analysis data in Japanese version of the
provided Zarit Burden
Interview”
(J-ZBI_8)
Ankri J, France Informal N=152 Demonstrated 22-item Effect on 22 items 3
Andrieu S, caregivers concurrent tool; Tool social and provided in
Beaufils B, of patients validity; already personal life; Table 2
Grand A, with Factor translated Psycho-
Henrard JC Alzheimer‟s analysis data in French logical
(2005) disease or provided burden;
related Feelings of
disorders guilt
Onishi J, Japan Caregivers N=116 Cronbach‟s Demonstrated 21-item 3
Suzuki Y, of patients alpha = .92 convergent tool; 4-
Umegaki with validity; Path point
H, dementia analysis data Likert
Nakamura provided scale; One
A, Endo H, item 0-100
Iguchi A self-rated
(2005)
Shurgot USA Latino N=48 Cronbach‟s Demonstrated 14-item Tool referred 3
GS, Knight caregivers alpha = .70 concurrent tool; to as
BG (2005) of patients validity 5-point “Modified
with Likert scale version of the
dementia Burden
Interview”
Abe K Japan Family N=219 Cronbach‟s Demonstrated 22-item Tool referred 3
(2007) caregivers alpha = .93 convergent tool to as
validity “Japanese
version of the
Zarit Burden
Interview” (J-
ZBI)
Cifu DX, USA Caregivers N=49 Demonstrated 22-item 3
Carne W, of concurrent tool; 4-
Brown R, Parkinson‟s and point
Pegg P, patients convergent Likert
Ong J, validity scale; 15
Qutu- minutes to
buddin A complete
et al
(2006)
Kim S, South Co- N=484 Cronbach‟s Demonstrated 22-item 3
Kim J, Korea habitating alpha = .89 concurrent tool; 5-
Stewart R, caregivers validity point
Bae K, of elders Likert scale
Yang S,
Shin Hj
et al (2006)
Schreiner Japan Family N=198 Demonstrated 22-item 3
AS, caregivers predictive tool; 5-
Morimoto of older validity point
T, Arai Y, adults, Likert scale
Zarit S stroke
(2006) caregivers
and chronic
obstructive
pulmonary
disease
caregivers
Martinez- Spain Caregivers N=79 Cronbach‟s Demonstrated 22-item Personal Tool referred 3
Martin P, of patients alpha = .93 convergent tool; 5- strain; to as “Zarit
Forjaz MJ, with validity point Role strain CB
Frades- Parkinson‟s Likert Inventory”
Payo B, Disease scale; Tool (ZCBI)
Rusinol already
AB, translated
Fernandez- in Spanish
Garcia JM,
Benito-
Leon J et al
(2007)
Appendix VI Included studies

Abe K. Reconsidering the caregiving stress appraisal scale: validation and examination of its
association with items used for assessing long-term care insurance in Japan. Arch
Gerontol Geriatr 2007;44:287-297.

Andren S, Elmstahl S. Family caregivers' subjective experiences of satisfaction in


dementia care: aspects of burden, subjective health and sense of coherence. Scand J
Caring Sci 2005;19:157-168.

Ankri J, Andrieu S, Beaufils B, Grand A, Henrard JC. Beyond the global score of the Zarit
Burden Interview: useful dimensions for clinicians. Int J Geriatr Psychiatry 2005;20:254-
260.

Anthony-Bergstrone CR, Zarit SH, Gatz M. Symptoms of psychological distress among


caregivers of dementia patients. Psychol Aging 1988;3(2):245-8.

Arai Y, Kudo K, Hosokawa T, Washio M, Miura H, Hisamichi S. Reliability and validity of


the Japanese version of the Zarit Caregiver Burden Interview. Psychiatry Clin Neurosci 1997;
51:281-7.

Arai Y, Washio M. Burden felt by family caring for the elderly members needing care in
southern Japan. Aging Ment Health 1999;3:158-164.

Asahara K, Momose Y, Murashima S, Okubo N, Magilvy JK. The relationship of social


norms to use of services and caregiver burden in Japan. J Nurs Scholarsh 2001;33(4):375-
380.

Asai MO, Kameoka VA. Sekentei and family caregiving of elders among the Japanese:
development and psychometric evaluation of the Sekentei Scale. J Gerontol 2007;62(3):179-
183.

Bachner YG, O'Rourke N, Carmel S. Psychometric properties of a modified version of the


Caregiver Reaction Assessment scale measuring caregiving and post-caregiving reactions
of caregivers of cancer patients. J Palliat Care 2007;23(2):80-6.

Bakas T, Austin JK, Jessup SL, Williams LS, Oberst MT. Time and difficulty of tasks
provided by family caregivers of stroke survivors. J Neurosci Nurs 2004;36(2)95-106.

Bakas T, Champion V. Development and psychometric testing of the Bakas Caregiving


Outcome Scale. Nurs Res 1999;48(5):250-9.

Bakas T, Champion V, Perkins SM, Farran CJ, Williams LS. Psychometric testing of the
revised 15-item Bakas Caregiving Outcomes Scale. Nurs Res 2006;55(5)346-355.

Bandeira M, Calzavara MG, Freitas LC, Barroso SM. Family Burden Interview Scale for
relatives of psychiatric patients (FBIS-BR): reliability study of the Brazilian version. Rev
Bras Psiquiatr 2007;29(1):47-50.

Bedard M, Molloy DW, Squire L, Dubois S, Lever JA, O'Donell M. The Zarit Burden
Interview: a new short version and screening version. Gerontologist 2001;41(5):652-7.

Brannan AM, Heflinger CA. The Caregiver Strain Questionnaire: measuring the impact on
the family of living with a child with serious emotional disturbance. J Emot Behav Disord
1997;5(4):212-223.

Brouwer WB, van Exel NJ, van Gorp B, Redekop WK. The CarerQol instrument: a new
instrument to measure care-related quality of life of informal caregivers for use in
economic evaluations. Qual Life Res 2006;15:1005-1021.

Buffum MD. Burden and humor: relationships to mental health in spouse caregivers of
Alzheimer's disease [Dissertation]. San Francisco (CA): University of California, San
Francisco; 1992.

Burgess ES, Drotar D, Taylor HG, Wade S, Stancis T, Yeates KO. The Family Burden of
Injury Interview: reliabiltiy and validity studies. J Head Trauma Rehabil 1999;14(4):394-
405.

Caserta MS, Lund DA, Wright, SD. Exploring the Caregiver Burden Inventory (CBI): further
evidence for a multidimensional view of burden. Int J Aging Hum Dev 1996;43(1):21-34.

Charlesworth GM, Tzimoula XM, Newman SP. Carers Assessment of Difficulties Index
(CADI): psychometric properties for use with carers of people with dementia. Aging Ment
Health 2007;11(2):218-225.

Chien C, Norman I. The validity and reliability of a Chinese version of the Family Burden
Interview Schedule. Nurs Res 2004;53(5):314-322.

Chio A, Gauthier A, Calvo A, Ghiglione P, Mutani R. Caregiver burden and patients'


perception of being a burden in ALS. Neurology 2005;64:1780-2.

Chou K. Testing a theoretical model of caregiver burden in a Chinese population


[Dissertation]. Nashville (TN); Vanderbilt University; 1997

Chou KR. A psychometric assessment of caregiver burden: a cross-cultural study. J


Pediatr Nurs 1997;12(6):352-362.

Cifu DX, Carne W, Brown R, Pegg P, Ong J, Qutubuddin A et al. Caregiver distress in
Parkinsonism. J Rehabil Res Dev 2006;43(4):499-508.

Cooper B, Kinsella GJ, Picton C. Development and initial validation of a family appraisal of
caregiving questionnaire for palliative care. Psychooncology 2006;15:613-622.

de Frias CM, Tuokko H, Rosenberg. Caregiving physical and mental health predicts
reactions to caregiving. Aging Ment Health 2005;9(4):331-6.

Elmstahl S, Malmberg B, Annerstedt L. Caregiver's burden of patients 3 years after stroke


assessed by a Novel Caregiver Burden Scale. Arch Phys Med Rehabil 1996;77:177-182.

Farran CJ, Miller BH, Kaufman JE, Davis L. Race, finding meaning, and caregiver distress.
J Aging Health 1997;9(3):316-333.

Ferrario SR, Baiardi P, Zotti AM. Update on the Family Strain Questionnaire: a tool for the
general screening of caregiving-related problems. Qual Life Res 2004;13:1425-1434.

Fuh J, Wang S, Liu H, Wang H. The Caregiving Burden Scale among Chinese caregivers of
Alzheimer patients. Dement Geriatr Cogn Disord 1999;10:186-191.

Gallagher-Thompson D, Arean P, Rivera P, Thompson LW. A psychoeducational


intervention to reduce distress in Hispanic family caregivers: results of a pilot study. Clin
Gerontol 2001;23:17-32.

Given CW, Given B, Stommel M, Collins C, King S, Franklin S. The Caregiver Reaction
Assessment (CRA) for caregivers to persons with chronic physical and mental
impairments. Res Nurs Health 1992;15:271-283.

Glajchen M, Kornblith A, Homel P, Fraidin L, Mauskop A, Portenoy RK. Development of a


brief assessment scale for caregivers of the medically ill. J Pain Symptom Manage 2005;
29(3):245-254.

Grater JJ. The impact of health care provider communication on self-efficacy and
caregiver burden in older spousal oncology caregivers [Dissertation]. Pittsburgh (PA);
University of Pittsburgh; 2005.

Greene JG, Smith R, Gardiner M, Timbury GC. Measuring behavioural disturbance of


elderly demented patients in the community and its effects on relatives: a factor analytic
study. Age Ageing 1982;11:121-6.

Grov EK, Fossa SD, Tonnessen A, Dahl AA. The Caregiver Reaction Assessment
psychometrics, and temporal stability in primary caregivers of Norwegian cancer patients in
late palliative phase. Psychooncology 2006;15:517-527.

Gupta R. The Perceived Caregiver Burden Scale for caregivers of elderly people in India. J
Appl Gerontol 2007;26(2):120-138.

Hebert R, Bravo G, Preville M. Reliability, validity and reference values of the Zarit Burden
Interview for assessing informal caregivers of community-dwelling older persons with
dementia. Can J Aging 2000;19(4):494-507.

Hirschman KB, Shea JA, Xie SX, Karlawish JH. The development of a rapid screen for
caregiver burden. J Am Geriatr Soc 2004;52:1724-9.

Hobbs TR. Depression in the caregiving mothers of adult schizophrenics: a test of the
resource deterioration model. Community Ment Health J 1997;33(5):387-399.

Huyck MH, Ayalon L, Yoder J. Using mixed methods to evaluate the use of a caregiver
strain measure to assess outcomes of a caregiver support program for caregivers of older
adults. Int J Geriatr Psychiatry 2007;22:160-5.

Ivarsson A, Sidenvall B, Carlsson M. The factor structure of the Burden Assessment Scale
and the perceived burden of caregivers for individuals with severe mental disorders. Scand
J Caring Sci 2004;18:396-401.

Kao HS, Acton GJ. Conceptualization and psychometric properties of the Caregiver
Burden Scale in Taiwan. Issues Ment Health Nurs 2006;27:853-866.

Kim S, Kim J, Stewart R, Bae K, Yang S, Shin I et al. Correlates of caregiver burden for
Korean elders according to cognitive and functional status. Int J Geriatr Psychiatry
2006;21:853-861.

King AC, Brassington G. Enhancing physical and psychological functioning in older family
caregivers: the role of regular physical activity. Ann Behav Med 1997;19(2):91-100.

Kinney JM, Stephens MA. Caregiving Hassles Scale: assessing the daily hassles of caring
for a family member with dementia. Gerontologist 1989;29(3):328-332.

Kosberg JI, Cairl RE, Keller DM. Components of burden: interventive implications.
Gerontologist 1990;30(2):236-242.

Kumamoto K, Arai Y. Validation of 'personal strain' and 'role strain': subscales of the short
version of the Japanese version of the Zarit Burden Interview (J-ZBI_8). Psychiatry Clin
Neurosci 2004;58:606-610.

Larson J, Franzen-Dahlin A, Billing E, Murray V, Wredling R. Spouse's life situation after


partner's stroke event: psychometric testing of a questionnaire. J Adv Nurs 2005;52(3):300-6.

Lawton MP, Kleban MH, Moss M, Rovine M, Glicksman A. Measuring caregiving appraisal.
J Gerontol 1989;44(3)P61-71.

Lee J, Friedmann E, Picot SJ, Thomas SA, Kim CJ. Korean version of the Revised
Caregiving Appraisal Scale: a translation and validation study. J Adv Nurs 2007;59:407-415.

Lemoine O, Lavoie S, Poulin C, Poirier L, Fournier L. Being the caregiver of a person with
a mental health problem. Can J Commun Ment Health 2005;24(2):127-143.

Levene JE, Lancee WJ, Seeman MV. The Perceived Family Burden Scale: measurement
and validation. Schizophr Res 1996;22:151-7.

Lim YM, Ahn Y. Burden of family caregivers with schizophrenic patients in Korea. Appl
Nurs Res 2003;16(2):110-7.

Lim YM, Luna I, Cromwell SL, Phillips LR, Russell CK, de Ardon ET. Toward a
cross-cultural understanding of family caregiving burden. West J Nurs Res 1996;18(3):252-
266.

Love A, Street A, Ray R, Harris R, Lowe R. Social aspects of caregiving for people living
with motor neurone disease: their relationships to carer well-being. Palliat Support Care
2005;3:33-8.
Macera CA, Eaker ED, Jannarone, RJ, Davis DR, Stoskopf CH. A measure of perceived
burden among caregivers. Eval Health Prof 1993;16(2):204-11.

Madianos M, Economou M, Dafni O, Koukia E, Palli A, Rogakou E. Family disruption,


economic hardship and psychological distress in schizophrenia: can they be measured?
Eur Psychiatry 2004;19(7):408-14.

Martinez-Martin P, Forjaz MJ, Frades-Payo B, Rusinol AB, Fernandez-Garcia JM, Benito-


Leon J et al. Caregiver burden in Parkinson's disease. Mov Disord 2007;22(7):924-31.

Martorell A, Pereda A, Salvador-Carulla L, Ochoa S, Ayuso-Mateos JL. Validation of the


Subjective and Objective Family Burden Interview (SOFBI/ECFOS) in primary caregivers to
adults with intellectual disabilities living in the community. J Intellect Disabil Res 2007;
51:892-901.

Matsuda O. Reliability and validity of the Subjective Burden Scale in family caregivers of
elderly relatives with dementia. Int Psychogeriatr 1999;11(2):159-170.

McCarty EF, Drebling C. Burden and professional caregivers: tracking the impact. J Nurses
Staff Dev 2002;18(5):250-7.

McCleery A, Addington J, Addington D. Family assessment in early psychosis. Psychiatry


Res 2007;152:95-102.

McKee KJ, Philp I, Lamura G, Prouskas C, Oberg B, Krevers B et al. The COPE Index – a
first stage assessment of negative impact, positive value and quality of support of care giving
in informal carers of older people. Aging Ment Health 2003;7(1):39-52.

McPherson KM, Pentland B, McNaughton HK. Brain injury - the perceived health of carers.
Disabil Rehabil 2000;22(15):683-9.

Messer SC, Angold A, Costello EJ, Burns BJ. The Child and Adolescent Burden Assessment
(CABA): measuring the family impact of emotional and behavioral problems. Int J Methods
Psychiatr Res 1996;6:261-84.

Miyashita M, Yamaguchi A, Kayama M, Narita Y, Kawada N, Akiyama M et al. Validation


of the Burden Index of Caregivers (BIC), a multidimensional short care burden scale from
Japan. Health Qual Life Outcomes [serial online] 2006 [cited 2009 Apr 6]; 4(52):[9 screens]..
Available from: URL:http://www.hqlo.com/content/4/1/52/abstract

Montgomery RJ, Borgatta EF. The effects of alternative support strategies on family care
giving. Gerontologist 1989;29(4):457-64.

Montgomery RJ, Gonyea JG, Hooyman NR. Caregiving and the experience of subjective and
objective burden. Fam Relat 1985;34:19-26.

Nachshen JS, Woodford L, Minnes P. The Family Stress and Coping Interview for families
of individuals with developmental disabilities: a lifespan perspective on family adjustment. J
Intellect Disabil Res 2003;47:285-90.
Nijboer C, Triemstra M, Tempelaar R, Sanderman R, van den Bos GA. Measuring both
negative and positive reactions to giving care to cancer patients: psychometric qualities of the
Caregiver Reaction Assessment (CRA). Soc Sci Med 1999;48:1259-69.

Novak M, Guest C. Application of a multidimensional caregiver burden inventory.


Gerontologist 1989;29(6):798-803.

O'Donovan ST. Dementia care giving burden and breakdown [Dissertation abstract].
Treforest(Wales): University of Glamorgan;2004. [cited 2009 Mar 27] Available from:
URL:http://www.cncforum.me.uk/S.O'Donovan%20PhD%20Thesis%20Exec%20Summary
%202004.pdf

Ohaeri JU, Campbell OB, Ilesanmi AO, Omigbodun AO. The psychosocial burden of caring
for some Nigerian women with breast cancer and cervical cancer. Soc Sci Med 1999;49:1541-
49.

Onishi J, Suzuki Y, Umegaki H, Nakamura A, Endo H, Iguchi A. Influence of behavioral


and psychological symptoms of dementia (BPSD) and environment of care on caregivers'
burden. Arch Gerontol Geriatr 2005;41:159-68.

Orbell S, Hopkins N, Gillies B. Measuring the impact of informal caring. J Community Appl
Soc Psychol 1993;3:149-63.

Ostman M, Hansson L. Family burden and care participation: a test-retest reliability study of
an interview instrument concerning families with a severely mentally ill family member.
Nord J Psychiatry 2000;54:327-32.

Pai S, Kapur RL. The burden on the family of a psychiatric patient: development of an
interview schedule. Br J Psychiatry 1981;138:332-35.

Phillips LR, Brewer BB, de Ardon ET. The Elder Image Scale: a method for indexing history
and emotion in family care giving. J Nurs Meas 2001;9(1):23-47.

Poulshock SW, Deimling GT. Families caring for elders in residence: issues in the
measurement of burden. J Gerontol 1984;39(2):230-39.

Reinhard AC, Gubman, GD, Horwitz AV, Minsky S. Burden assessment scale for families of
the seriously mentally ill. Eval Program Plann 1994;17(3):261-69.

Rivera-Navarro J, Morales-Gonzalez JM, Benito-Leon J. Madrid Demyelinating Diseases


Group (GEDMA). Informal care giving in multiple sclerosis patients: data from the Madrid
Demyelinating Disease Group study. Disabil Rehabil 2003;25(18):1057-67.

Robinson BC. Validation of a Caregiver Strain Index. Gerontology 1983;38(3):344-48.

Roud H, Keeling S, Sainsbury R. Using the COPE assessment tool with informal carers of
people with dementia in New Zealand. N Z Med J 2006;119(1237):38-49.

Scazufca M. Brazilian version of the Burden Interview Scale for the assessment of burden of
care in carers of people with mental illnesses. Rev Bras Psiquiatr 2002;24(1):12-17.
Scholte op Reimer WJ, de Haan RJ, Pijnenborg JM, Limburg M, van den Bos GA.
Assessment of burden in partners of stroke patients with the sense of competence
questionnaire. Stroke 1998;29:373-79.

Schrag A, Morley D, Quinn N, Jahanshahi M. Development of a measure of the impact of


chronic parental illness on adolescent and adult children: The Parental Illness Impact Scale
(Parkinson's disease). Parkinsonism Relat Disord 2004;10:399-405.

Schreiner AS, Morimoto T, Arai Y, Zarit S. Assessing family caregiver's mental health using
a statistically derived cut-off score for the Zarit Burden Interview. Aging Ment Health
2006;10(2):107-11.

Schwarz KA, Blixen CE. Does home health care affect strain and depressive symptomatology
for caregivers of impaired older adults? J Community Health Nurs 1997;14(1):39-48.

Schwarz KA, Dunphy G. An examination of perceived stress in family caregivers of older


adults with heart failure. Exp Aging Res 2003;29:221-35.

Schwiebert VL, Giordano FG, Zhang G, Sealander KA. Multidimensional measures of


caregiver burden: a replication and extension of the caregiver burden inventory. J Ment
Health Aging 1998;4(1):47-57.

Sevick MA, Sereika S, Matthews JT, Zucconi S, Wielobob C, Puczynski S et al. Home-based
ventilator-dependent patients: measurement of the emotional aspects of home caregiving.
Heart Lung 1994;23(4):269-78.

Shurgot GS, Knight BG. Preliminary study investigating acculturation, cultural values, and
psychological distress in Latino caregivers of dementia patients. Hisp Health Care Int
2005;3(1):37-44.

Siu, BW, Yeung TM. Validation of the Cantonese version of Family Burden Interview
Schedule on caregivers of patients with obsessive-compulsive disorder. Hong Kong J
Psychiatry 2005;15:109-17.

Stolarik A, Lindsay P, Sherrard H, Woodend AK. Determination of the burden of care in


families of cardiac surgery patients. Prog Cardiovasc Nurs 2000;15:4-10.

Struchen MA, Atchison TB, Roebuck TM, Caroselli JS, Sander AM. A multidimensional
measure of caregiving appraisal: validation of the Caregiver Appraisal Scale in traumatic
brain injury. J Head Trauma Rehabil 2002;17(2):132-54.

Szmukler GI, Burgess P, Herrman H, Benson A, Colusa S, Bloch S. Caring for relatives with
serious mental illness: the development of the Experience of Caregiving Inventory. Soc
Psychiatry Psychiatr Epidemiol 1996;31:137-48.

Tarricone I, Leese M, Szmukler GI, Bassi M, Berardi D. The experience of carers of patients
with severe mental illness: a comparison between London and Bologna. Eur Psychiatry
2006;21:93-101.
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version of the Zarit Caregiver Burden Interview. Cad Saude Publica 2004;20(2):372-76.

Thommessen B, Aarsland D, Braekhus A, Oksengaard AR, Engedal K, Laake K. The


psychosocial burden on spouses of the elderly with stroke, dementia and Parkinson's disease.
Int J Geriatr Psychiatry 2002;17:78-84.

Thornton M, Travis SS. Analysis of the reliability of the Modified Caregiver Strain Index.
Geronotology 2003;58B(2):S127-S132.

Tsang HW, Chan AS, Chung AW, Lam EC, Ting SO. Reliability of the Chinese version of
the Perceived Family Burden Scale. Int J Rehabil Res 2006;28(3):289-91.

Tseh OY, Loke Yuen A, Chan MF, Kwok T. Psychometric properties of the Chinese version
of the “Cost of Care Index” to measure caregiving burdens among Chinese informal
caregivers. Asian J Nurs Stud 2005;8(2):4-13.

Ulstein I. The Relative Stress Scale, a useful instrument to identify various aspects of carer
burden in dementia? Int J Geriatr Psychiatry 2007;22:61-7.

Uttl B, Santacruz P, Litvan I, Grafman J. Caregiving in progressive supranuclear palsy.


Neurology 1998;51:1303-9.

van Exel NJ, Scholte op Reimer WJ, Brouwer WB, van den Berg B, Koopmanschap MA, van
den Bos, GA. Instruments for assessing the burden of informal caregiving for stroke patients
in clinical practice: a comparison of CSI, CRA, SCQ and self-rated burden. Clin Rehabil
2004;18:203-14.

Vilaplana M, Ochoa S, Martinez A, Villalta V, Martinez-Leal R, Puigdolles E et al.


Validation in Spanish population of the Family Objective and Subjective Burden Interview
(ECFOS-II) for relatives of patients with schizophrenia. Actas Esp Psiquiatr 2007;35(6):372-
81.

Vitaliano PP, Russo J, Young HM, Becker J, Maiuro RD. The Screen for Caregiver Burden.
Gerontologist 1991;31(1):76-83.

Wancata J, Krautgartner M, Berner J, Alexandrowicz R, Unger A, Kaiser G et al. The


Carers' Needs Assessment for Dementia (CNA-D): development, validity and reliability. Int
Psychogeriatr 2005;17:393-406.

Weitzner MA, Jacobsen PB, Wagner H, Friedland J, Cox C. The Caregiver Quality of Life
Index-Cancer (CQOLC) Scale: development and validation of an instrument to measure
quality of life of the family caregiver of patients with cancer. Qual Life Res 1999;8:55-63.

Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of
feelings of burden. Gerontologist 1980;20(6):649-55.
Appendix VII - Excluded studies
Antonucci TC, Sherman AM. Measures of social support and caregiver burden. Generations
1997;21(1):48-52.
Reason for exclusion: Used only as reference. Retrieved relevant primary sources.

Arai Y. Family caregiver burden and quality of home care in the context of the Long-Term
Care insurance scheme: an overview. Psychogeriatrics 2006;6:134-8.
Reason for exclusion: Review of previous studies. No psychometric properties of burden
tools reported.

Arai, Y, Sugiura M, Miura H, Washio M, Kudo K. Undue concern for others' opinions deters
caregivers of impaired elderly from using public services in rural Japan. Int J Geriatr
Psychiatry 2000;15:961-8.
Reason for exclusion: No psychometric properties of tool reported.

Arguelles A, Loewenstein DA, Eisdorfer C, Arguelles T. Caregivers' judgments of the


functional abilities of the Alzheimer's disease patient: impact of caregivers' depression and
perceived burden. J Geriatr Psychiatry Neurol 2001;14(2):91-8.
Reason for exclusion: No psychometric properties of tool reported.

Aubeeluck A, Buchanan H. The Huntington's Disease quality of life battery for carers:
reliability and validity. Clin Genet 2007;71:434-445.
Reason for exclusion: Neither tool nor subscale measures burden.

Bachner YG, O'Rourke N. Reliability generalization of responses by care providers to the


Zarit Burden Interview. Aging Ment Health 2007;11(6):678-685.
Reason for exclusion: Meta-analysis of previous studies.

Bairdi JM. The influence of health status, burden, and degree of cognitive impairment on
the self-care agency and dependent-care agency of caregivers of elders. [Dissertation]. Detroit
(MI): Wayne State University; 1997.
Reason for exclusion: Montgomery Borgatta Burden Scale used. Insufficient psychometric
properties reported.

Baronet AM. Factors associated with caregiver burden in mental illness: a critical review of
the research literature. Clin Psychol Rev 1999;19(7):819-841.
Reason for exclusion: Detailed review of burden but not about tools used to measure burden.

Battista MA, Pate DS, Hierholzer R, Howsepian AA, Mogelof J. Caregiver reports: a
systematic method of comparison with clinical impressions. Clin Gerontol 2004;27(4):52-70.
Reason for exclusion: No psychometric properties of the tool measuring burden reported.

Bautz-Holter E, Sveen U, Rygh J, Rodgers H, Wyller TB. Early supported discharge of


patients with acute stroke: a randomized controlled trial. Disabil Rehabil 2002;24(7):348-
355.
Reason for exclusion: Randomized control trial of an intervention. No psychometric
properties of a tool measuring burden reported.

Beland F, Bergman H, Lebel P, Clarfield AM, Tousignant P, Contandriopoulos, AP et al. A


system of integrated care for older persons with disabilities in Canada: results from a
randomized controlled trial. J Gerontol A Biol Sci Med Sci 2006;61(4):367-373.
Reason for exclusion: Randomized control trial. No psychometric properties of a tool
measuring burden reported.

Bell CM, Araki SS, Neumann PJ. The association between caregiver burden and caregiver
health-related quality of life in Alzheimer disease. Alzheimer Dis Assoc Disord
2001;15(3):129-136.
Reason for exclusion: No psychometric properties of the tool measuring burden reported.

Blake H, Lincoln ND, Clarke DD. Caregiver strain in spouses of stroke patients. Clin
Rehabil 2003;17:312-7.
Reason for exclusion: Caregiver Strain Index tool was used but no psychometric properties
were reported.

Boling W. The health of chronically ill children: lessons learned from assessing family
caregiver quality of life. Fam Community Health 2005;28:176-183.
Reason for exclusion: Tool used did not extrapolate burden.

Caap-Ahlgren M, Dehlin O. Factors of importance to the caregiver burden experienced by


family caregivers of Parkinson's disease patients. Aging Clin Exp Res 2002;14(5):371-7.
Reason for exclusion: Caregiver Burden Scale tool was used but insufficient psychometric
properties reported.

Cafferata GL, Stone R. The caregiving role: dimensions of burden and benefits. Compr
Gerontol A 1989;3:57-64.
Reason for exclusion: Informal Caregivers Survey tool used but insufficient psychometric
properties reported.

Chadda RK, Singh TB, Ganguly KK. Caregiver burden and coping: a prospective study of
relationship between burden and coping in caregivers of patients with schizophrenia and
bipolar affective disorder. Soc Psychiatry Psychiatr Epidemiol 2007;42:923-930.
Reason for exclusion: Burden Assessment Scale tool was used but insufficient psychometric
properties reported.

Chan RC, Lee PW, Lieh-Mak F. Coping with spinal cord injury: personal and marital
adjustment in the Hong Kong Chinese setting. Spinal Cord 2000;38:687-696.
Reason for exclusion: Insufficient psychometric properties reported.

Chen H, Chen M, Shyu Y, Tang W. Development and testing of a scale to measure


caregiving load in caregivers of cancer patients in Taiwan, the Care Task Scale – Cancer.
Cancer Nurs 2007;30(3):223-231.
Reason for exclusion: Care Task Scale - Cancer tool used measures tasks not burden.

Chen M, Hu L. The generalizability of caregiver strain index in family caregivers of


cancer patients. Int J Nurs Stud 2002;39:823-9.
Reason for exclusion: Caregiver Strain Index tool used. Insufficient sample size.

Chiou C, Chen I, Wang H. The health status of family caregivers in Taiwan: an


analysis of gender differences. Int J Geriatr Psychiatry 2005;20:821-6.
Reason for exclusion: Insufficient psychometric properties reported for tools used. Analysis
not focused on measuring burden

Chou K, Jiann-Chyun L, Chu H. The reliability and validity of the Chinese version of the
Caregiver Burden Inventory. Nurs Res 2002; 51(5):324-331.
Reason for exclusion: Data from study was reported in Chou‟s 1997 dissertation. Data and
dissertation are already included in this review.

Chou K, LaMontagne LL, Hepworth JT. Burden experienced by caregivers of relatives with
dementia in Taiwan. Nurs Res 1999;48(4):206-214.
Reason for exclusion: Data from study was reported in Chou‟s 1997 dissertation. Data and
dissertation are already included in this review.

Claar RL, Parekh PI, Palmer SM, LaCaille RA, Davis RD, Rowe SK et al. Emotional
distress and quality of life in caregivers of patients awaiting lung transplant. J Psychosom
Res 2005;59:1-6.
Reason for exclusion: Scale for Caregiver Burden (SCB) tool used but insufficient
psychometric properties reported.

Cooper C, Robertson MM, Livingston G. Psychological morbidity and caregiver burden in


parents of children with Tourette's disorder and psychiatric comorbidity. J Am Acad Child
Adolesc 2003;42(11):1370-5.
Reason for exclusion: Child and Adolescent Impact Assessment tool was used but
insufficient psychometric properties reported.

Courtney LJ. Post-traumatic stress disorder symptomatology in family caregivers of


persons with recent traumatic brain injuries: an exploratory study [Dissertation]. Houston
(TX): University of Houston; 1997.
Reason for exclusion: Study about post-traumatic stress disorder. Not relevant to burden
tools.

Cousins R, Davies AD, Turnbull CJ, Playfer JR. Assessing caregiving distress: a
conceptual analysis and a brief scale. Br J Clin Psychol 2002;41:387-403.
Reason for exclusion: Caregiver Distress Scale tool was used. Insufficient psychometric
properties reported.

Daly MP, Fredman L. A simple function-based scale for practitioners to assess the
patient-caregiver dyad. Top Geriatr Rehabil 1998;14(1):45-53.
Reason for exclusion: Patient-Caregiver Functional Unit Scale, Burden Interview Scale,
Perceived Stress Scale and Geriatric Depression tool were used. Burden was associated with
function but insufficient psychometric properties of tools used reported.

Davis LL, Weaver, M, Zamrini E, Stevens A, Kang D, Parker CR. Biopsychological


markers of distress in informal caregivers. Biol Res Nurs 2004;6:90-99.
Reason for exclusion: Not relevant to burden tools. Article about cortisol production.

Deeken JF, Taylor KL, Mangan P, Yabroff KR, Ingham JM. Care for the caregivers: a review
of self-report instruments developed to measure the burden, needs, and quality of life of
informal caregivers. J Pain Symptom Manage 2004;26(4):922-953.
Reason for exclusion: Review of previous studies. Some tools described measure burden
and report their psychometric properties. Relevant primary sources retrieved.

Douglas SL, Daly BJ. Caregivers of long-term ventilator patients: physical and
psychological outcomes. Chest [serial online] 2003 [cited 2008 Apr 3];123:1073-1081.
Available from: URL:http://www.chestjournal.org/content/123/4/1073.full.pdf+html
Reason for exclusion: Center for Epidemiologic Studies Depression Scale used but
insufficient psychometric properties for the measurement of burden reported.

Dracup K, Evangelista LS, Doering L, Tullman D, Moser DK, Hamilton M. Emotional


well-being in spouses of patients with advanced heart failure. Heart Lung 2004;33(6):354-
361.
Reason for exclusion: Caregiver Appraisal Tool was used but insufficient psychometric
properties of the subscales that measure burden reported.

Draper B, Bowring G, Thompson C, Van Heyst J, Conroy P, Thompson J. Stress in


caregivers of aphasic stroke patients: a randomized controlled trial. Clin Rehabil 2007;
21:122-130.
Reason for exclusion: Relative Stress Scale was used but insufficient psychometric
properties of burden measurement reported.

Draper BM, Poulos CJ, Cole AM, Poulos RG, Ehrlich F. A comparison of caregivers for
elderly stroke and dementia victims. J Am Geriatr Soc 1992;40:896-901.
Reason for exclusion: Relative Stress Scale was used but insufficient psychometric
properties of burden measurement reported.

Edwards B, Ung L. Quality of life instruments for caregivers of patients with cancer: a
review of their psychometric properties. Cancer Nurs 2002;25(5):342-9.
Reason for exclusion: Review of literature describing Caregiver Quality of Life Index -
Cancer Scale, the Caregiver Quality of Life Index, the Quality of Life Tool and the Quality of
Life Index - Cancer Version tools. Insufficient psychometric properties of burden
measurements reported.

Edwards NE, Ruettiger KM. The influence of caregiver burden on patients' management of
Parkinson's disease: implications for rehabilitation nursing. Rehabil Nurs 2002;27(5):182-6.
Reason for exclusion: Zarit Burden Interview used. Insufficient psychometric properties
reported.

England M, Roberts B. Theoretical and psychometric analysis of caregiver strain. Res Nurs
Health 1996;19:499-510.
Reason for exclusion: Parent Caregiver Burden Index used to measure response to burden
not burden itself.

Fredman L, Daly MP. Weight change: an indicator of caregiver stress. J Aging Health 1997;
9(1):43-69.
Reason for exclusion: Zarit Burden Interview used but insufficient psychometric properties
reported. Variable measured was weight change.

Freyne A, Kidd N, Coen R, Lawlor BA. Burden in carers of dementia patients: higher levels
in carers of younger sufferers. Int J Geriatr Psychiatry 1999;14:748-788.
Reason for exclusion: Zarit Burden Interview used but insufficient psychometric properties
reported.

Gallego CF, Roger MR, Bonet IU, Vinets LG, Ribas AP, Pisa RL et al. Validation of a
questionnaire to evaluate the quality of life of nonprofessional caregivers of dependent
persons. J Adv Nurs 2001;33(4):548-554.
Reason for exclusion: ICUB97 tool used. Insufficient psychometric properties reported
for burden measurement.

Gauthier A, Vignola A, Calvo A, Cavallo E, Moglia C, Selliti L et al. A longitudinal study on


quality of life and depression in ALS patient-caregiver couples. Neurology 2007;68:923-926.
Reason for exclusion: Caregiver Burden Inventory used but study not actually about burden.
Insufficient psychometric properties reported.

Gopinath PS, Chaturvedi SK. Measurement of distressful psychotic symptoms perceived


by the family: preliminary findings. Indian J Psychiatry 1986;28(4):343-5.
Reason for exclusion: Tool used to measure distress not burden. Author's definition of
distress not appropriate for this review.

Grant JS, Weaver M, Elliott TR, Bartolucci AR, Giger JN. Sociodemographic, physical and
psychosocial factors associated with depressive behaviour in family caregivers of stroke
survivors in the acute care phase. Brain Inj 2004;18(8):797-809.
Reason for exclusion: Caregiving Burden Scale was used. Insufficient psychometric
properties reported.

Gupta R. Impact of mental health on perceived caregiver burden in South Asian families.
J of Ment Health and Aging 2002;8(1):45-57.
Reason for exclusion: Perceived Caregiver Burden Scale used. Insufficient psychometric
properties reported.

Hartnick CJ, Bissell C, Parsons SK. The impact of pediatric tracheotomy on parental
caregiver burden and health status. Arch Otolaryngol Head Neck Surg 2003;129:1065-9.
Reason for exclusion: Pediatric Tracheotomy Health Status Instrument used. Domain 4 of
the tool included parental rating of their own caregiving burden. Insufficient psychometric
properties for domain reported.

Hirakawa Y, Kuzuya M, Masuda Y, Enoki H, Iwata M, Hasegawa J et al. Evaluation of


gender differences in caregiver burden in home care: Nagoya Longitudinal Study of the Frail
Elderly (NLS-FE). Psychogeriatrics 2006;6:91-9.
Reason for exclusion: Japanese version of the Zarit Burden Interview used to
study gender differences in caregiving. Insufficient psychometric properties reported.

Im K, Belle SH, Schulz R, Mendelsohn AB, Chelluri L. Prevalence and outcomes of


caregiving after prolonged (> 48 Hours) mechanical ventilation in the ICU. Chest
2004;125(2):597-606.
Reason for exclusion: Patient Behavior Frequency and Caregiver Reaction to These
Behaviors tool was used. Insufficient psychometric properties of the measurement of burden
reported.

Jones PS, Jaceldo KB, Lee JR, Zhang XE, Meleis AI. Role integration and perceived
health in Asian American women caregivers. Res Nurs Health 2001;24:133-144.
Reason for exclusion: Tool used measured role integration, role satisfaction and role stress
not burden as defined for this review.

Jones SL, Jones PK. Caregiver burden: who the caregivers are, how they give care, and
what bothers them. J Health Soc Policy 1994;6(2):71-89.
Reason for exclusion: Review of burden but not about tools used to measure burden. No
psychometric properties of tools reported.

Juarez G. Perceptions of the caregiving experience and quality of life: Mexican/Mexican-


American caregivers providing care to adults with advanced cancer [Dissertation]. Los
Angeles (CA): University of California Los Angeles; 2003.
Reason for exclusion: Study was of quality of life. No psychometric properties of tools used
to measure burden reported.

Kirschling JM, Pittman JF. Measurement of spiritual well-being: a hospice caregiver


sample. Hosp J 1989;5(2):1-11.
Reason for exclusion: Spiritual Well-Being Scale used does not measure burden.

Kleinman L, Frank L, Ciesla G, Rupnow M, Brodaty H. Psychometric performance of an


assessment scale for strain in nursing care: The M-NCAS. Health Qual Life Outcomes [serial
online] 2004 [cited 2009 Mar 27];2(62):[10 screens]. Available from: URL:
http://www.pubmedcentral.nih.gov/picrender.fcgi?artid=535543&blobtype=pdf
Reason for exclusion: Modified Nursing Care Assessment Scale measured burden felt by
nurses as the formal caregivers. Insufficient psychometric properties reported.

Kosberg JI, Cairl RE. The Cost of Care Index: a case management tool for screening
informal care providers. Gerontologist 1986;26(3):273-8.
Reason for exclusion: Insufficient psychometric properties reported.

Koukia E, Madianos MG. Is psychosocial rehabilitation for schizophrenic patients


preventing family burden? A comparative study. J Psychiatr Ment Health Nurs 2005;
12:415-422.
Reason for exclusion: Study measures psychosocial rehabilitation. No psychometric
properties of the tools used to measure burden reported.

Lane AB, Dede DE, Chandra SP, Gilmore R. Continued caregiver burden: seizure-free
may not equal burden-free. J Epilepsy 1998;11:361-7.
Reason for exclusion: Caregiver Strain Index used. Insufficient psychometric properties
reported.

Lauderdale SA. The intraindividual dimensional structure and discriminant validity of


subjective caregiver burden and depression [Dissertation]. Lubbock (TX): Texas Tech
University; 2002.
Reason for exclusion: Only three caregivers participated. Insufficient sample size.

Lee EE, Farran CJ, Tripp-Reimer T, Sadler GR. Assessing the cultural appropriateness of
the finding meaning through caregiving scale for Korean caregivers. J Nurs Meas
2003;11(1):19-28.
Reason for exclusion: Finding Meaning Through Caregiving Scale used measured cultural
appropriateness not burden. Insufficient sample size of 10 participants.

Livingston G, Mahoney R, Regan C, Katona C. The Caregivers of Alzheimer‟s Disease


Problems Scale (CAPS): development of a new scale within the LASER-AD study. Age
Ageing 2005;34:287-290.
Reason for exclusion: Caregivers for Alzheimer's Disease Problems Scale used did not
measure burden.

Longo CJ, Fitch M, Deber RB, Williams AP. Financial and family burden associated with
cancer treatment in Ontario, Canada. Support Care Cancer 2006;14:1077-1085.
Reason for exclusion: Tool was administered to patients not caregivers. No information
relevant to review.

Marwit SJ, Meuser TM. Development and initial validation of an inventory to assess grief in
caregivers of persons with Alzheimer's disease. Gerontologist 2002;42:751-765.
Reason for exclusion: Caregiver Grief Inventory used did not measure burden.

McCullagh E, Brigstocke G, Donaldson N, Kalra L. Determinants of caregiving burden and


quality of life in caregivers of stroke patients. Stroke 2005;36:2181-6.
Reason for exclusion: Caregiver Burden Score used. Insufficient psychometric properties
reported.

Mets T, Vandewoude M, Jacquy J, Deblander A, MacDonald K, Sloesen A. Patient and


caregiver outcomes after 6 + 1.5 months of rivastigmine therapy for mild-to-moderate
Alzheimer's disease: the Belgian FExT study. Curr Med Res Opin 2007;23:2485-2501.
Reason for exclusion: Zarit Caregiving Burden Scale used. Insufficient psychometric
properties reported.

Miyamoto Y, Ito H, Otsuka T, Kurita H. Caregiver burden in mobile and non-mobile


demented patients: a comparative study. Int J Geriatr Psychiatry 2002;17:765-773.
Reason for exclusion Zarit Burden Interview used. Insufficient psychometric properties
reported.

Montgomery RJ, Stull DE, Borgatta EF. Measurement and the analysis of burden. Res
Aging 1985;7(1):137-152.
Reason for exclusion: Review of burden but not about tools used to measure burden. No
information relevant to review.

Murray PD, Lowe JD, Anderson HN, Horne HL, Lott WC, Macdonald S. Validity studies of
the Filial Anxiety Scale. Gerontologist 1996;36(1):110-2.
Reason for exclusion: Filial Anxiety Scale used does not measure burden.

Nagatomo I, Akasaki Y, Uchida M, Tominaga M, Hashiguchi W, Takigawa M. Gender of


demented patients and specific family relationship of caregiver to patients influence mental
fatigue and burdens on relatives as caregivers. Int J Geriatr Psychiatry 1999;14:618-625.
Reason for exclusion: An unnamed caregiver burden scale was developed and used.
Insufficient psychometric properties reported.

O'Rourke N, Cappeliez P, Guindon S. Depressive symptoms and physical health of


caregivers of persons with cognitive impairment: analysis of reciprocal effects over time. J
Aging Health 2003;15:688-712.
Reason for exclusion: Zarit Burden Interview used. Insufficient psychometric properties
reported. Study measures depression and physical symptoms.

Ohaeri JU. Caregiver burden and psychotic patients' perception of social support in a
Nigerian setting. Soc Psychiatry Psychiatr Epidemiol 2001;36:86-93.
Reason for exclusion: Original burden questionnaire and Goldberg's General Health
Questionnaire used. Insufficient psychometric properties reported.

Osterkamp MB, Jess J, Welborn A. Measuring the impact of a community workshop on


family caregivers. Proceedings of the 36th Annual Scientific Meeting of the Gerontological
Society 1983; Nov 17-22.
Reason for exclusion: Zarit Burden Interview used. Insufficient psychometric properties
reported.

Pakenham KI. Development of a measure of coping with multiple sclerosis caregiving.


Psychol Health 2002;17(1):97-118.
Reason for exclusion: Caregiver Reaction Assessment used. Tool assesses coping strategies
not burden.

Pearce K, McGovern J, Barrowclough C. Assessment of need for psychosocial


interventions in an Asian population of carers of patients with schizophrenia. J Adv Nurs
2006;54:284-292.
Reason for exclusion: Relatives' Cardinal Needs Schedule used does not measure burden.

Picot SJ, Youngblut J, Zeller R, Development and testing of a measure of perceived


caregiver rewards in adults. J Nurs Meas 1997;5(1):33-52.
Reason for exclusion: Picot Caregiver Rewards Scale measures perceived rewards not
burden.

Pirraglia PA, Bishop D, Herman DS, Trisvan E, Lopez RA, Torgersen CS, et al. Caregiver
burden and depression among informal caregivers of HIV-infected individuals. J Gen
Intern Med 2005;20:510-514.
Reason for exclusion: Caregiver Strain Index used. Insufficient psychometric properties
reported.

Porock D, Oliver DP. Commentary on Schneider RA (2004) assessing the Fatigue Severity
Scale for use among caregivers of chronic renal failure patients. J Clin Nurs 2005;14:1153-4.
Reason for exclusion: Manuscript about fatigue related to caregiving, not about burden.

Reinhard SC. Living with mental illness: effects of professional contacts and personal
control on caregiver burden [Dissertation]. New Brunswick (NJ): Rutgers The State
University of New Jersey; 1991.
Reason for exclusion: Original tool developed for this study. Insufficient psychometric
properties reported.

Rodgers H, Soutter J, Kaiser W, Pearson P, Dobson R, Skilbeck C et al. Early supported


hospital discharge following acute stroke: pilot study results. Clin Rehabil 1997;11:280-7.
Reason for exclusion: General Health Questionnaire used. Insufficient psychometric
properties reported.

Rosenfarb IS, Bellack AS, Aziz N. A sociocultural stress, appraisal, and coping model of
subjective burden and family attitudes toward patients with schizophrenia. J Abnorm
Psychol 2006;115(1):157-165.
Reason for exclusion: Global Self Report Rating of Family Burden used. Insufficient
psychometric properties reported.

Rubio DM, Berg-Weger, M, Tebb SS. Assessing the validity and reliability of well-being and
stress in family caregivers Soc Work Res 1999;23(1):54-63.
Reason for exclusion: Caregiver Well-Being Scale and Caregiver Strain Index were
analyzed using structural equation modeling. Insufficient psychometric properties reported.

Rudd AG, Wolfe CD, Tilling K, Beech R. Randomised controlled trial to evaluate early
discharge scheme for patients with stroke. Br Med J 1997;315:1039-1044.
Reason for exclusion: Caregiver Strain Index used. Insufficient psychometric properties
reported.

Samuelsson AM, Annerstedt L, Elmstahl S, Samuelsson S, Grafstrom M. Burden of


responsibility experienced by family caregivers of elderly dementia sufferers. Scand J
Caring Sci 2001;15:25-33.
Reason for exclusion: Caregivers reported their experience with burden but no tools were
used to measure burden.

Schene AH, Tessler RC, Gamache GM. Instruments measuring family or caregiver burden
in severe mental illness. Soc Psychiatry Psychiatr Epidemiol 1994;29:228-240.
Reason for exclusion: Review of burden tools used in severe mental illness. Relevant
primary sources retrieved.

Schott-Baer D. Dependent care, caregiver burden, and self-care agency of spouse


Caregivers. Cancer Nurs 1993;16(3):230-6.
Reason for exclusion: Burden Scale used. Insufficient psychometric properties reported.

Schure LM, van den Heuvel E, Stewart RE, Sanderman R, de Witte LP, Meybom-de Jong
B . Beyond stroke: description and evaluation of an effective intervention to support family
caregivers of stroke patients. Patient Educ Couns 2006;62:46-55.
Reason for exclusion: Randomised control trial of an intervention. Tools used did not
measure burden. No information relevant to review.

Sherwood PR, Given CW, Given BA, Von Eye A. Caregiver burden and depressive
symptoms: analysis of common outcomes in caregivers of elderly patients. J Aging Health
2005;17(2):125-147.
Reason for exclusion: Caregiver Reaction Assessment used correlated relationship of burden
to depression. Insufficient psychometric properties reported.

Shigenobu K, Ikeda M, Fukuhara R, Maki N, Hokoishi K, Nebu A et al. Reducing the burden
of caring for alzheimer's disease through the amelioration of 'delusions of theft' by drug
therapy. Int J Geriatr Psychiatry 2002;17:211-7.
Reason for exclusion: Zarit Burden Interview used. Insufficient psychometric properties
reported.

Shikiar R, Shakespeare A, Sagnier P, Wilkinson D, McKeith I, Dartigues J et al. The Impact


of metrifonate therapy on caregivers of patients with Alzheimer's disease: results from the
MALT Clinical Trial. J Am Geriatr Soc 2000;48:268-274.
Reason for exclusion: Did not measure psychometric properties of screening tools.

Shyu YL, Lee H, Chen M. Development and testing of the Family Caregiving
Consequences Inventory for home nursing assessment in Taiwan. J Adv Nurs
1999;30(3):646-654.
Reason for exclusion: Family Caregiving Consequences Inventory used does not measure
burden.

Simmons LA. Self-perceived burden in cancer patients. Cancer Nurs 2007;30(5):405-411.


Reason for exclusion. Self-perceived Burden Scale used measures burden perceived by
patient not by caregiver. No information relevant to the review.

Sisk RJ. Caregiver burden and health promotion. Int J Nurs Stud 2000;37(1):37-43.
Reason for Exclusion: Objective and Subjective Burden Scales used. Insufficient
psychometric properties reported.

Smith AM, Schwirian PM. The relationship between caregiver burden and TBI survivors'
congnition and functional ability after discharge. Rehabil Nurs 1998;23(5):252-7.
Reason for exclusion: Zarit Burden Interview used. Insufficient psychometric properties
reported.

Son G, Zauszniewski JA, Wykle ML, Picot SJ. Translation and validation of
Caregiving Satisfaction Scale into Korean. West J Nurs Res 2000;22(5):609-622.
Reason for exclusion: Caregiving Satisfaction Scale used does not measure burden.

Takahashi M, Tanaka K, Miyaoka H. Depression and associated factors of informal


caregivers versus professional caregivers of demented patients. Psychiatry Clin Neurosci
2005;59:473-480.
Reason for exclusion: Zarit Burden Interview used. Insufficient psychometric properties
reported.

Tebb S. An aid to empowerment: a caregiver well-being scale. Health Soc Work


1995;20(2):87-92.
Reason for exclusion: Well-being scale used does not measure burden.

Teschendorf B, Schwartz C, Ferrans CE, O'Mara A, Novotny P, Sloan J. Caregiver role


stress: when families become providers. Cancer Control 2007;14(2):183-9.
Reason for exclusion: Caregivers described their experiences with stress and burden. No
psychometric properties of tools measuring burden were reported.

Teunisse S, Mayke MA, Derix MM, van Crevel H. Assessing the severity of dementia:
patient and caregiver. Arch Neurol 1991;48:274-7.
Reason for exclusion: Original tool used to measure burden. Insufficient psychometric
properties reported.
The 10/66 Dementia Research Group. Care arrangements for people with dementia in
developing countries, Int J Geriatr Psychiatry 2004;19:170-7.
Reason for exclusion: Insufficient psychometric properties reported.

Thompson C, Spilsbury K. Support for carers of people with Alzheimer's type dementia
[review]. The Cochrane Collaboration in The Cochrane Library 2008.
Reason for exclusion: Full-text of this systematic review was withdrawn from The Cochrane
Collaboration. No information available for review.

Thompson EH, Futterman AM, Gallagher-Thompson D, Rose JM, Lovett SB. Social
support and caregiving burden in family caregivers of frail elders. J Gerontol
1993;48(5):245-254.
Reason for exclusion: Three original tools, the Zarit Burden Interview and Activities of
Daily Living tools used.

Todtman KL. A financial impact scale for long-term caregivers: application to Alzheimer
family caregivers [Dissertation]. Lubbock (TX): Texas Tech University; 1989.
Reason for exclusion: Financial Impact Scale did not measure burden.

Ulstein I, Wyller TB, Engedal K. High score on the Relative Stress Scale, a marker of
possible psychiatric disorder in family carers of patients with dementia. Int J Geriatr
Psychiatry 2007;22:195-202.
Reason for exclusion: Data from study was reported in Ulstein‟s other 2007 article. Data and
analysis already included in this review.

Visser-Meily JM, Post MW, Riphagen II, Lindeman E. Measures used to assess burden
among caregivers of stroke patients: a review. Clin Rehabil 2004;18:601-623.
Reason for exclusion: Meta-analysis of previous studies. Relevant primary sources retrieved.

Vitaliano PP, Young HM, Russo J. Burden: a review of measures used among caregivers
of individuals with dementia. Gerontologist 1991;31(1):67-75.
Reason for exclusion: Meta-analysis of previous studies. Relevant primary sources retrieved.

Vrabec NJ. Literature review of social support and caregiver burden 1980-1995. J Nurs
Scholarsh 1997;29(4):383-8.
Reason for exclusion: Literature review of previous burden studies and instruments.

Watanabe Y, Shiel A, McLellan DL, Kurihara M, Hayashi K. The impact of traumatic brain
injury on family members living with patients: a preliminary study in Japan and the UK.
Disabil Rehabil 2001;23(9):370-378.
Reason for exclusion: Original family experiences and attitudes questionnaire, family
stress, family problems and solutions questionnaire and family needs questionnaire used.
Insufficient psychometric properties reported.

Weitzner MA, Meyers CA, Steinbruecker S, Saleeba AK, Sandifer SD. Developing a care
giver quality-of-life instrument. Cancer Practice 1997;5(1):25-31.
Reason for exclusion: Quality-of-Life instrument used did not measure burden. Insufficient
psychometric properties reported.
Whitney J, Haigh R, Weinman J, Treasure J. Caring for people with eating disorders:
factors associated with psychological distress and negative caregiving appraisals in carers
of people with eating disorders. Br J Clin Psychol 2007;46:413-428.
Reason for exclusion: Experience of Caregiving Inventory does not separate out subscale for
burden.

Winter L, Gitlin LN. Evaluation of a telephone-based support group intervention for female
caregivers of community-dwelling individuals with dementia. Am J Alzheimers Dis Other
Demen 2006;21(6):391-7.
Reason for exclusion: Randomised control trial of an intervention. Zarit Burden Inventory
used but insufficient psychometric properties reported.

Wolfe CD, Tilling K, Rudd AG. The effectiveness of community-based rehabilitation for
stroke patients who remain at home: a pilot randomized trial. Clin Rehabil 2000;14:563-
9.Reason for exclusion: Randomised controlled trial of an intervention. No psychometric
properties of tools measuring burden reported.

Wyller TB, Thommessen B, Sodring KM, Sveen U, Pettersen AM, Bautz-Holter E et al.
Emotional well-being of close relatives to stroke survivors. Clin Rehabil 2003;17:410-7.
Reason for exclusion: General Health Questionnaire (GHQ-20) and Caregiver Strain Index
used. Insufficient psychometric properties reported.

Yeh S, Johnson MA, Wang S. The changes in caregiver burden following nursing home
placement. Int J Nurs Stud 2002;39:591-600.
Reason for exclusion: A modified Caregiver Reaction Assessment was used. Insufficient
psychometric properties reported.